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Can you believe that the WEGO Health Awards launch in just two week? We’re getting so excited that we thought we’d take a trip down memory lane and revisit these past finalists. Each year we are so impressed and inspired by all the nominees, so take a few minutes to learn about these three and share our wonderment!

Have a great weekend, everyone!

Sabrina Cannella Ehlers-Danlos Syndrome Patient Leader Twitter | Website | Facebook | Instagram

“It was early in life that I became a firm believer in Mahatma Ghandi’s words “Be the change you wish to see in the world”. Growing up I was a healthy active child with most of my time spent as a competitive dancer, however nearly 8 years ago my world changed when I was admitted to the local children’s hospital in Toronto. What began as a presumed case of appendicitis quickly turned into a list of rare complex chronic illnesses that affect her organs and organ systems. It was during one of my first and longest hospital admissions where I found myself feeling so incredibly alone. I looked at myself in the mirror and didn’t not recognize myself in any sense. I lost many friends, some family, and I was stuck in a cycle of doctors who did not understand my conditions or how to treat me. That’s when I was made aware of the gap in our healthcare system between patients and their care team. Sometimes it doesn’t help to listen to doctors give you difficult news, or to face them while they ridicule you because they can’t understand, it isn’t comforting to hear that you don’t have any more options and though it might be silly it is incredibly frustrating to struggle with undergoing a procedure and having a nurse make you feel that you’re acting unreasonably. I decided to be that person that would bridge that gap. When I made that promise to myself in 2011 in a lonely hospital room, I intended to save and help others and bring happiness throughout their journeys. Never would I have imagined that I would end up being the one who is filled with happiness and gratitude. I have found that my voice is just as powerful as my actions are. It is an honour to be able to speak out in the community about conditions that I face, and so many others do. I do it not for pity, or for sympathy but really I make my voice heard so I can save someone else from feeling alone and lost in their diagnosis of a rare disease then my job is fulfilled. I always say that my main goal in life, despite all I am enduring, is to leave this world a better place than when I entered it. I have learned that my pain does me no good unless I transform it into something that is and am so grateful for the opportunity with WEGO to help me get closer and closer to that goal.”

 

Tom Kindlon Myalgic Encephalomyelitis Patient Leader Twitter | Website | Facebook

“I have Myalgic Encephalomyelitis (ME)*, sometimes called Chronic Fatigue Syndrome (CFS) since February 1989, when I was just 16. I wasn’t diagnosed till autumn 1994 by which time I was severely affected. I blame the late diagnosis, and following advice to exercise, for the severity of my illness as in the early years I was only mildly affected. Preventing others falling into such a debilitated state, particularly long-term, is one of the things that motivates me. I try to do this in two main ways: (i) trying to increase awareness and understanding of ME/CFS generally both among relevant professionals and also the general public; (ii) I also want to raise awareness specifically about the potential dangers of pushing yourself too far with exercise and similar interventions. I follow the medical literature closely to help with this and have published various papers and letters in peer-reviewed publications on the topic. As well as preventing others becoming as ill as I have become, I want to also improve matters for myself and the millions of other patients with ME/CFS around the world. We have started calling ourselves the “millions missing” which refers both to the lives we are missing out on and also to the fact that we feel the condition has been largely forgotten about and neglected compared to some other better well-known conditions. I believe there is power in numbers and together we can make a difference to improve matters for people affected by ME/CFS and their loved ones. I very much hope there will be a cure or, if not, better treatments (ideally ones that are easily accessible) in my lifetime.”

Marla Murasko Down’s Syndrome Leader Twitter | Website | Facebook | Instagram

“As a Down Syndrome Parent Influencer, I am extremely passionate and dedicated to spreading awareness about Down Syndrome and advocating for the rights of individuals with Down syndrome to live a quality of life. I make it my mission to educate others to have a growth mindset when it comes to looking at inclusion not only in the schools but in their community. I do this not only for my son, but for all individuals with Down Syndrome young and old, and for those not yet born. Why? Because I believe their lives matter, as well as their education and well-being, their independence, opportunities for employment, and being valued as a member of their community. They deserve the right to grow, develop friendships and experience what life has to offer. This is my life’s mission – not only to make a difference but to be a facilitator for change!”

If you’re feeling inspired by these top Patient Leaders, you should join our network!

When you join our Patient Leader Network you’re first to know about the new and exciting things we’re doing at WEGO Health. Not only will we reach out to you when we have paid opportunities in your condition area, but we’ll also connect you with other Patient Leaders so you can share ideas and help each other amplify your messages. What are you waiting for? Join today!

Did you miss our last #FollowFriday? You can catch up here!

The post Patient Leader #FollowFriday – May 18th, 2018 appeared first on WEGO Health.

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Advocacy is hard enough as it is, but how do you handle spreading awareness when you have a condition that makes people uncomfortable to talk about? How do you approach the sensitive topics? In the May #WEGOHealthChat, Jackie and Kristen from the WEGO Health team talked you through bridging the gap and sharing their own experiences with “embarrassing” medical conditions.

If you’d like to read the chat transcript you can find it here or you can get an overview of the chat below.

Q1: How did you bridge the gap between “I’m uncomfortable talking about this” and “I want to be an advocate”? #WEGOHealthChat

A1: I spent a lot of time hiding my IBD diagnosis. I was embarrassed and uncomfortable. I made family lie about why I was in the hospital all the time. The problem wasn’t really other people. The problem was me. I was uneducated about what IBD was. (cont.) #WEGOHealthChat https://t.co/LB9JH511rb

— Jackie Zimmerman (@JackieZimm) May 8, 2018

1A. This is something I continue to work on everyday of recovery. Whenever I feel uncomfortable or awkward I always think: Do I want future children to go through this? That usually motivates me to speak freely about my eating disorder #WEGOHealthChat

— Kristen (@srvingofspprt) May 8, 2018

A1: My parents were in denial that it was happening, so in my late teens I had to learn to speak up for myself. When I developed a very loud voice, I realized I could use my voice to help others #WEGOHealthChat https://t.co/0Hw77XRaBj

— Kat in California (@1BendyKat) May 8, 2018

A1: it was when my symptoms were at their worst & I felt totally isolated & I thought I was the only one with my problems that I decided to find others out there who I could connect to! & decided I wanted to give a voice to people like me who think they’re alone #wegohealthchat https://t.co/nJ4ZegfYEy

— Mary (@HeadacheHeroine) May 8, 2018

Q2: Do you notice that other people are uncomfortable when you talk about your health condition? #WEGOHealthChat

2. YASSS! I never understood why. People have talked about their conditions openly and I bring up my eating disorder and suddenly it’s so tense. #WEGOHealthChat https://t.co/Y0MkE0IxbO

— Kristen (@srvingofspprt) May 8, 2018

2 cont. I also notice people don’t know what to say. I think that’s why most reactions are so uncomfortable. The reality is, it doesn’t need to be weird. #WEGOHealthChat

— Kristen (@srvingofspprt) May 8, 2018

A2: I have definitely seen people get uncomfortable but again its almost always directly related to their lack of education about IBD. Most people just think you’re pooping uncontrollably and poop makes people REALLY uncomfortable. (cont.) #WEGOHealthChat https://t.co/gS4PPdvf3n

— Jackie Zimmerman (@JackieZimm) May 8, 2018

A2: So they shy away, or try to use cute terms instead of actual sentences about what is going on inside my body. It can be pretty insulting at times.  But I try to bring humor when I can to break the tension. #WEGOHealthChat

— Jackie Zimmerman (@JackieZimm) May 8, 2018

Moving on to questions two!

Q2: Do you notice that other people are uncomfortable when you talk about your health condition? #WEGOHealthChat

— WEGO Health (@wegohealth) May 8, 2018

A2: Definitely! Most people change the subject, cringe, say ”that sucks”. But it all depends on the person or how it’s presented. Others want to know how I manage or knows someone else with #epilepsy and wants to connect me. #wegohealthchat

— Whitney Petit (@CfEpilepsy) May 8, 2018

Q3: How do you approach educating the public about sensitive topics? #WEGOHealthChat

3a. I still like to use humor to educate even publicly. I think it relaxes everyone and makes the issue less serious- at least seem less serious in the moment! #WEGOHealthChat https://t.co/MsaDtayQM9

— Kristen (@srvingofspprt) May 8, 2018

3a. Cont I also try to use analogies or shows to try and explain #mentalhealth. I try to take situations or things my audience is familiar with so they can relate more. #WEGOHealthChat

— Kristen (@srvingofspprt) May 8, 2018

A3: It goes back to knowing your audience. You can get away w/more fun things when you’re talking to other patients or maybe patient families. Jokes help. Sharing your own struggles, or a story about a time where you laughed at yourself can break the ice. (cont.) #WEGOHealthChat https://t.co/StLhS3lJX9

— Jackie Zimmerman (@JackieZimm) May 8, 2018

A3: But if you’re talking to a crowd that has no relation to your condition area, it may be best to share the facts, use the jargon and go out of your way to not make people uncomfortable. No one learns well if they are uncomfortable or feel singled out. #WEGOHealthChat

— Jackie Zimmerman (@JackieZimm) May 8, 2018

A3 – ive found talking about sensitive or uncomfortable topics, in many cases, tightens bonds between patients. They realize they have support for those areas too. #WEGOHealthChat

— Must Stop MS! (@MustStopMS) May 8, 2018

A3: When I worked w/patient advocacy org I did webinars & panel sessions. Now on my own – blog/podcast/YouTube, I try to educate w/combo of my vulnerability, other “patients” experience, and healthcare professionals. https://t.co/qngYjZmnAR #WEGOHealthChat https://t.co/F7ROykZCl0

— Leslie Krongold, EdD (@Leslie_GHF) May 8, 2018

Q4: Are there still conditions outside of your own that make you uncomfortable? How do you put yourself in check #wegohealthchat

Honestly, my last 2 years at @wegohealth have really opened my eyes thanks to all you lovely folks. I feel like I have such a better understanding and perspective than most individuals thanks to all you have shared. #WEGOHealthChat https://t.co/LjSZWJ52mF

— Kristen (@srvingofspprt) May 8, 2018

A4: It almost feels shameful to say yes, but yes. I get exposed to SO many conditions through this job I see thing I never knew existed. I have learned through my life and the people I work with, that your second thought should always be “how can I learn more”. #WEGOHealthChat https://t.co/Up3PBSGZjW

— Jackie Zimmerman (@JackieZimm) May 8, 2018

A4: Oh man, yes. I’m gonna be totally honest and say, yes. It’s usually not diseases you think either. And it’s not an uncomfortable, like, “Can I catch it?” It’s usually pure confusion. So, I ask questions, I google. I fix my ignorance. SWIFTLY! #WEGOHealthChat https://t.co/r7WfT9Q0IH

— TheCrazyCreoleMommy (@CrzyCreoleMommy) May 8, 2018

A4: After what happened to my community in the late 80s/early 90s, we can never be too careful! #wegohealthchat

— Candace (@RareCandace) May 8, 2018

Q5: What are some organizations or hash tags that are doing a great job at breaking stigmas about sensitive health conditions? #WEGOHealthChat

A5: #NoStigmas really knocks this out of the park. Their name says it all. I think @NoStigmas is straight to the point and covers education along with sharing patient stories. #WEGOHealthChat https://t.co/1XkQKNeoCj

— Jackie Zimmerman (@JackieZimm) May 8, 2018

Shoutout to these folks for breaking stigmas: @stampoutstigma @projectheal @stigmafighters @healstigmaradio @lindseyhallblog @gabehoward @mikeveny #WEGOHealthChat https://t.co/MKwLnmzyjv

— Kristen (@srvingofspprt) May 8, 2018

A5 For #IBS, #Gastroparesis, & other #FGID: @IFFGD, @gimotility, @ANMSociety, & @RomeFoundation. 4 #MentalHealth: @JPBrown5 #wegohealthchat

— Melissa VanHouten (@melissarvh) May 8, 2018

Q6: What is your advice for someone recently diagnosed with a health condition that has a lot of stigma attached to it? #WEGOHealthChat

A6: So much to say about this. Think about why this condition makes you or other uncomfortable. Is it because of the location on your body? The symptoms? The way it makes you act? What is it? Then start tackling those things. (cont.) #WEGOHealthChat https://t.co/XngqYEU31b

— Jackie Zimmerman (@JackieZimm) May 8, 2018

A6: Sometimes, being very candid gets their attention and helps people to get over their own biases and systematic stigmas. Learning the severity of a disease, regardless of the location, can be a real eye opener for some people. (cont.) #WEGOHealthChat

— Jackie Zimmerman (@JackieZimm) May 8, 2018

5a. Real talk- you can’t get rid of your condition. Your best bet is to own it, and use your experiences to better the lives of others. #WEGOHealthChat https://t.co/7MgamPYc5g

— Kristen (@srvingofspprt) May 8, 2018

5a cont. Think of how much the stigma pained you, and use that as a driver to advocate so others don’t fall to the same challenges in the future #WEGOHealthChat

— Kristen (@srvingofspprt) May 8, 2018

A6: Find others who have the same condition. Finding a group familiar with (and hopefully not stigmatizing against) your illness helps kind of ease into talking about it. Plus, you can see how they address stigma against it. #wegohealthchat

— Maya Northen Augelli (@mayanorthen) May 8, 2018

A6. Stigmas often have misconceptions and prejudice sadly these effect those suffering we must change and educate with quality information and support #wegohealthchat

— Deborah Andio (@debbiea001) May 8, 2018

Don’t miss #WEGOHealthChat the second Tuesday of every month at 1pm ET!

The post May #WEGOHealthChat Recap: Tackling Sensitive Issues in Advocacy appeared first on WEGO Health.

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What exactly is a podcast?

Podcasting has been around for a while, but it really started to take off in the early 2000s. In the past few years, podcasting has seen an explosion in popularity. Well-known podcasts like Serial became a phenomenon that was talked about as frequently and as passionately as must-see television. Today, several big podcasts have even landed TV deals.

The number of podcast fans continues to grow. – source

In short, podcasts are audio files available to stream or download. They are like radio, but basically, they allow anyone to create their own internet radio station.

Podcasting is unique in that it is a medium that many people enjoy while doing other things. Listening to podcasts while commuting or exercising or getting things done around the house is common. Most listeners use their smartphones or tablets to listen to podcasts, but they can be accessed from the web on a desktop computer as well. Podcasting is intimate, and it can feel like the podcast host and the listener are having a personal conversation, even if it’s one-sided.

Of interest to businesses, podcasting has proven to be a very successful advertising platform. In fact, recent data suggests that “podcast listeners really are the holy grail advertisers hoped they’d be.” In 2017, advertisers invested over $200 million in podcast advertising. Because podcast listeners are “hyper-engaged, super-supportive audiences,” this investment is likely to result in a higher return.

The average listener isn’t skipping over ads on podcasts, according to data from Apple’s Podcast Analytics feature. When a brand is a good fit for the podcast audience and when the ads are engaging and even entertaining, the advertiser is probably more likely to see a high return. This is especially true when compared to ad spend on more traditional media.

The growth of podcast advertising spend shows no signs of slowing down. – source

Just about every industry is represented in podcasting these days. Comedy, politics, business, and pop culture podcasts may be the most popular overall, but there is an ever-growing roster of health podcasts. Out of the 500,000+ total podcasts on Apple Podcasts, the Health category alone features tens of thousands of podcasts – and that number is growing every day.

Healthcare companies are starting to use podcasting as a way to engage with patients, but the medium has even more value for Patient Leaders. Podcasting is another way for Patient Leaders to connect, to advocate, and to share their stories. Many Patient Leaders are using podcasting as one tool in their advocacy arsenal, along with traditional blogging and social media platforms.

2017 WEGO Health Awards – Best in Show: Podcasts

Last fall, five Patients Leaders were selected as finalists for the “Best in Show: Podcasts” award category in the WEGO Health Awards. These Patient Leaders are truly leading the way for this growing platform, and their podcasts are having a significant impact on patients.

Here are the top five Patient Leaders in podcasting from the most recent WEGO Health Awards.

Top Podcast Patient Leader #1: Gabe Howard

Patient Leader Gabe Howard is an award-winning writer & speaker and the host of a podcast called The Psych Central Show, along with co-host Vincent M. Wales. This weekly podcast covers topics related to mental health and psychology.

Here is how Gabe describes his podcast:

The Psych Central Show is an award-winning, weekly podcast that approaches psychology and mental health in a casual and accessible fashion. Listen as our hosts speak candidly with experts to break down complex topics in simple and understandable ways.

As a person living with bipolar and anxiety disorders, Gabe offers unique insights. While speaking fearlessly and passionately about important topics that aren’t often discussed so openly, Gabe is an empathetic advocate for many in the mental health community.

Gabe and his podcast are tirelessly fighting to reduce stigma in a way that is having a substantial impact on many patients and caregivers. The numbers speak for themselves. The Psych Central Show is a Top 10 podcast in the Health category on iTunes, a remarkable feat for such a competitive category. The show reaches over 10,000 unique listeners per month.

Gabe, and The Psych Central Show, was the official 2017 Best in Show: Podcasts winner.

Top Podcast Patient Leader #2: Lisa Cypers Kamen

Lisa hosts Harvesting Happiness Talk Radio, a syndicated and internationally-broadcast radio show. Highlights from this radio show are shared on her podcast, Harvesting Happiness. Lisa works as a documentary filmmaker, positive psychology coach, author, and lecturer, in addition to hosting the show.

Here is how Lisa describes her podcast:

Harvesting Happiness with Lisa Cypers Kamen broadcasts consciously-prepared brain food from the beaches of Malibu, California. HHTR promotes happiness, well-being, and global human flourishing with a diverse and proactive collection of the greatest thought leaders and change agents who are devoting their lives to creating a better world in which to live. Each episode focuses on personal growth, human interest, self-improvement, healthy lifestyle, and positive psycho-social education.

In both her practice and the radio show and podcast, there is a focus on addiction, trauma, and life crisis recovery, but Lisa covers a wide range of topics. Examples of recent episodes include a discussion with an expert on the importance of sleep, a conversation about gut health, and a look at how stress can be harnessed for good. The overall emphasis of the show is on mental health and positive psychology, always from a stigma-free perspective.

In nominating Lisa for the award, the show was described as “incredibly interesting and educational.”

Top Podcast Patient Leader #3: Parijat Deshpande

On the Delivering Miracles podcast, Parijat Deshpande takes her own experiences with infertility, high-risk pregnancy and a pre-term birth and helps empower others around all things related to reproductive health and family building. In digging into and sharing the real, raw side of these often-challenging issues, Parijat is shedding light on topics that can feel isolating. By diving deep into topics like postpartum nutrition, pregnancy complications, surrogacy, and the emotional challenges of every path to parenthood, she helps others feel not so alone.

Here is how Parijat describes her podcast:

Parijat Deshpande, high-risk pregnancy expert, clinically-trained therapist and former high-risk mom, explores the real, raw side of family building. From infertility, high-risk pregnancy, bed rest and prematurity to healing after baby comes home, the Delivery Miracles Podcast with Parijat is an entertaining, inspirational, informative show that gives you the tools to have a healthy pregnancy so that you can give your baby a strong start to life.

Parijat is a great example of a Patient Leader who combines her life experiences as a patient with her work as a clinically-trained therapist to be a Patient Expert who is making a big impact on others. In addition to her podcast, Parijat has an active blog presence and her work is frequently mentioned on outlets like Psych Central, Everyday Health, and Forbes.

Top Podcast Patient Leader #4: Leslie Krongold, Ed.D.

Leslie Krongold has been an active Patient Advocate for nearly 20 years, ever since her myotonic dystrophy diagnosis. She began the Glass Half Full podcast in 2016 as a means of continuing and furthering that advocacy. The podcast focuses on helping others cope with chronic illnesses in a positive way.

Here is how Leslie describes her podcast:

This podcast features people with chronic health conditions as they share their positive coping tools and practitioners of mind-body and/or alternative health who have helped people with a chronic health condition.

Most of the episodes of the podcast feature an expert guest or two. Leslie and her guests generally focus on one main topic per episode. For example, recent episodes have focused on music and its therapeutic and potentially mood-elevating role, yoga and healthy aging, and the need for more rare disease research. Leslie shares pieces of her own story but she also makes a point to shine a light on other Patient Leaders and cover a wide variety of health conditions.

Top Podcast Patient Leader #5: Matt Pappas

Surviving My Past is a unique podcast hosted by Patient Leader Matt Pappas that focuses on supporting those who have lived through the trauma of abuse. Matt uses his experiences of being a survivor of childhood sexual abuse, narcissistic abuse, and bullying to empower and support others. Matt’s goal is to “validate and encourage” his listeners.

Here is how Matt describes his podcast:

A podcast about inspiring others through the power of sharing your story, and those who’ve dedicated their lives to helping others in the areas of mental health, anxiety, and trauma recovery.

Many episodes of Matt’s podcast feature expert guests, including therapists, writers, and other survivors. This podcast is yet another standout in mental health awareness and advocacy podcasting, but it is special in its focus on surviving abuse. That said, the show has expanded to cover other mental health topics as well, like a recent episode that focused on bipolar disorder. Matt is a Certified Life Coach and uses the podcast as an avenue to help others move forward and let go of things holding them back.

The Future of Health Podcasting is Bright!

The 2017 WEGO Health Awards podcast finalists happened to have a focus around mental health, but there is a podcast for just about every health condition out there. As more people learn about and fall in love with this medium, the number of health podcasts will only continue to grow. Although there was some speculation in the past that podcasting was merely a trendy fad or even a bubble, the podcast is enduring and has proven itself to be much more than a fad.

If you’re new to podcasts, or if you want to revisit the idea of listening to podcasts on a regular basis, make haste to Apple Podcasts, Stitcher, iTunes, or one of the many other podcasting platforms and start listening! The five podcasters highlighted here are certainly a good place to start. They have set a high bar for quality and have made a big difference to fellow patients as they share their stories and fiercely advocate for others.

The post Top Podcast Patient Leaders to Watch appeared first on WEGO Health.

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We’ve got heart eyes for days for these four heart disease Patient Leaders! For this week’s #FollowFriday, we’re featuring four fantastic people who are advocating to keep hearts everywhere healthy and happy. Through sharing their experiences with unexpected heart disease, they’re helping to educate and raise awareness to keep us all a little healthier!  Have a great weekend, everyone.

Greg Meritt Heart Disease Patient Leader Twitter | Website | FacebookInstagram

“I share my story because I have a chance at a second life after a sudden cardiac arrest and heart attack left me without a heartbeat for more than 30 minutes (watch my story here and here).  Following a 30-year career working with college students in residence halls, I decided and hoped that I could take those experiences and apply them in healthcare settings where I now find tremendous meaning and purpose in my life.  Though I have spent much of my time in the last 20 months advocating in cardiac rehab, I also care deeply about helping all areas of healthcare practice and research.  I would want everyone to know that there are always 2 experts in every healthcare interaction…. (the practitioner/researcher AND the patient/caregiver) and there is such incredible potential to authentically partner to improve health care.  If we can work together to authentically partner, I believe we will find incredible innovative ways to solve the many thorny problems that exist in today’s healthcare environment!  I’m an eternal optimist! :)”

 

Cynthia Brown Heart Disease Patient Leader Twitter | Website

“I was diagnosed 15 years ago with heart disease, and found out very quickly that I did not know even one woman who was living with heart disease that I could talk to about it!  I was very scared, as there was no heart history in my family, let alone it being a woman, and all of those huge cardiac words being thrown at me, threw me for a loop.  I began researching any organizations that might be out there for women such as myself, for both support and information.  I learned quickly to advocate for myself, as who better than me to advocate for me, when I was being blown off time and time again with cardiologists stating that I was suffering from panic/anxiety attacks, or was hormonal.  I advocate on a national level, as heart disease is the number one killer of women, and I want to teach other women how to better advocate for themselves when it comes to their heart health…if I can save even one life, then all of my hard work will be worth it!”

 Mike Durbin Heart Disease Patient Leader TwitterWebsiteFacebook | Instagram

“I was diagnosed with Congestive Heart Failure in December 2008 at the age of 24.  I was also misdiagnosed with type 2 diabetes at that time, when what I actually live with is a form of type 1 diabetes called LADA.  I began my blog, My Diabetic Heart, at first as a way to document and process what I was going through, and later continued to write in hopes that it would help someone else going through the same thing to not feel so alone.  Nearly 10 years later, I’m still sharing my story because it has touched and inspired people to strive to make the most of their health and live their life to the fullest.  Remember, a little heart can do big things.”

  Sarah Klena Heart Disease Patient Leader TwitterWebsite | Instagram

“After having a heart attack at 31, my focus has become advocating for heart health and heart disease awareness, especially in young women. If I can have a heart attack without any warning signs or risk factors, then anyone can be at risk. Now I work with various organizations to bring awareness and advocacy to the cause.”

If you’re feeling inspired by these top Patient Leaders, you should join our network!

When you join our Patient Leader Network you’re first to know about the new and exciting things we’re doing at WEGO Health. Not only will we reach out to you when we have paid opportunities in your condition area, but we’ll also connect you with other Patient Leaders so you can share ideas and help each other amplify your messages. What are you waiting for? Join today!

Did you miss our last #FollowFriday? You can catch up here!

The post Heart Disease Patient Leader #FollowFriday – May 11th, 2018 appeared first on WEGO Health.

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Finding My Tribe

In 2012, I wrote my first blog about my journey with inflammatory bowel disease (IBD). There was no rhyme or reason to my post, I was simply telling my story. Over the next few weeks, my journey in blogging about IBD evolved into advocacy. I had found purpose in sharing information about my life with the disease and how I maneuvered through life with it. But I still felt alone. I still had not found anyone like me. For a year, I was living through the advocacy stratosphere unsure of my impact and whether or where everyone else was. It took a full year before I found my IBD tribe. It took another year after that before I found my advocacy tribe at the first annual HealtheVoices Advocacy Conference in 2014.

What is HealtheVoices?

The HealtheVoices conference is a seminar created by Caroline Pavis of, hosted by a variety of sponsors, such as WEGO Health and Everyday Health. It was inspired by thegrowing community of online advocates that have been instrumental in moving the needle on healthcare, research budgets, and global disease community recognition. The concept was to bring advocates together for a short time to give them tools and resources through a variety of sessions and community. It was meant to be a reinforcement of advocacy work that has already begun or give a potential advocate the base from which to begin. I don’t believe it was expected that the conference would blossom into the information-packed love fest that it is today.

Over the past four years, HealtheVoices has grown from only 60 advocates from approximately 10 disease communities to 120 advocates in over 40 disease communities. Because many of the advocates attending HealtheVoices are multi-condition representatives, there is a lot of representation and cross-promotion. The weekend has extended out to 3 full days of sessions, plus a few mini-summits for some communities. What makes this conference so special is that it is uniquely tailored to patient advocates. Often we live in a bubble where we put out a lot of love and support, but don’t receive anything back. While attending HealtheVoices, there are patient-friendly accommodations such as quiet rooms, ice packs, heating pads, comfortable chairs, food restriction-friendly options, and shorter walking distance between hotel rooms and the conference area. There are opportunities to socialize and network outside of your condition community. And then, of course, there are the sessions. Every year, there are great sessions that all have some sort of value and opportunity for personal growth within advocacy.

This year’s sessions were no different. A keynote opening speech from MTV VJ and Actress, Karen Duffy, about injecting humor into advocacy and life as a patient was the perfect jump start to a weekend where we needed to keep our hearts and minds open. Panels of bravery and diversity through your advocacy, advocating authentically across disease spaces, how to create great visuals to express your advocacy through imagery, how to start a podcast, how to utilize Twitter, and creating great content, were peppered through the weekend. Patient advocates left full of community and knowledge: empowered and ready to continue through another year of blogging, marching, and fighting.

What did I take away from the weekend?

I went into HealtheVoices the same way I do every year, with an open heart and mind, ready to receive as much as my brain can take. There was something I could appreciate in every session I attended. A way to reach others in a way I wasn’t aware I could. How to manipulate light to enhance my narrative and what I want to convey through images. How to become more authentic in using my voice and knowledge without sounding arrogant. I found resources from other advocates for some of my followers, that I did not have available to me. I stepped away with renewed friendships, new friendships, and a refreshed outlook on my own life as an advocate, patient, and mother. Looking forward to next year!

The post HealtheVoices 2018: Finding My Tribe appeared first on WEGO Health.

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Not so long ago, pharmaceutical companies would shy away from social media. As a regulated industry, it wasn’t surprising that pharma might want to avoid the regulatory and reputation risks that come along with the open, generally unmoderated, exchanges on social media.

But these days that’s changed. Pharma can be seen Facebooking and Tweeting along with the rest of the healthcare industry. What happened? Do the benefits of social media now outweigh the risks for pharma? Has pharma found a way to engage in the uncontrolled environment of social media and stay out of trouble with regulators?

Let’s take a look.

Social Media: What’s Changed for Pharma?

Social media has become part of everyday life for the vast majority of people. This includes pharma’s customers: patients, their caregivers, and healthcare providers. By making it easy to find and access health information, social media has given patients and their caregivers additional avenues for managing their health concerns. Healthcare providers also find value in social media through collaboration with peers and patient groups.

Pew Research Center reports that among internet users:

  • 80% have searched online for health information, including info on diseases and treatments
  • 24% have consulted online reviews of particular drugs and treatments
  • 25% have watched an online video about health or a medical issue

Patients, their caregivers, and healthcare providers all look to social media for information and support. PWC Health Research Institute reports that among survey respondents:

  • 34% say that info they found on social media would affect their taking certain medications
  • 40% say that info found on social media would affect how they coped with a chronic illness or their approach to diet and exercise

Patients, caregivers, and healthcare providers all turn to social media for health information that helps them understand and address their health concerns. – Source

Despite regulatory concerns and risks to company reputation, pharma has come to realize that social media provides a way to reach more people, raise brand awareness, and discover what people really want from them. In fact, because of how other industries engage with their customers via social media, pharma now recognizes that people expect to reach every company and their customer service department (pharma included) via Twitter.

With this evolution in social media’s role, pharma has found that staying on the sidelines presents its own set of risks.

Pharma’s Social Media Landscape

While pharma’s overall engagement is growing on social media, when looking at individual pharmaceutical companies, you will see differing approaches and levels of engagement. This makes it hard to characterize pharma’s social media activity in a single, ubiquitous manner.

As pharma’s social media participation has become established, pharma continues to see its following grow. – Source

In its 2018 Social Check-up on pharma, Ogilvy CommonHealth reports that while pharma companies are posting less frequently to social media, their audiences on various platforms are still growing.

Unmetric undertook the project of tracking and analyzing pharma’s activity on social media. For the five years leading up through 2016, Unmetric tracked and analyzed the social media activity of these 16 pharma brands: Abbott, Abbvie, Allergan, AstraZeneca, Bayer, Boehringer Ingelheim, Bristol-Myers Squibb, Eli Lilly & Company, GSK, Johnson & Johnson, Merck, Novartis, Novo Nordisk, Pfizer, Roche, and Sanofi.

Unmetric found a couple of characteristics unique to pharma:

Pharma is picky about which social media platforms it uses.

Pharmaceutical companies don’t automatically establish a presence on every major social media platform available. – Source

Pharma’s activity was tracked on Twitter, LinkedIn, Facebook, YouTube, Pinterest, and Instagram.

When it comes to social media, pharmaceutical companies don’t automatically establish a presence on every major social media platform. On average, pharma is active on five out of the six major social media platforms tracked.

Being present on Twitter and LinkedIn was most common. Facebook and YouTube were next most common. Pinterest and Instagram were least common with less than half of pharmaceutical companies establishing a presence there.

Pharma is selective about the type of information it shares on social media.

Pharma limits and silos the information it shares on social media. – Source

Unmetric identified four categories of topics commonly discussed by pharma on social media:

  • Corporate social profiles
  • Careers in pharma
  • OTC brand profiles
  • Branded community properties

Each of these topics tend to be contained in their individual silo. For example, nearly every company shares corporate profile information on social media. But, recruiting and human resources (i.e., careers in pharma) are generally handled by a separate social media account and/or on a separate social media platform, most likely LinkedIn.

None of the pharmaceutical companies profiled by Unmetric publish information in all four silos, reflecting how pharma picks and chooses among topics discussed in social media.

Unmetric attributes this siloing of topics and the limited company participation to pharma’s regulatory environment.

Pharma’s Regulatory Environment

Pharmaceutical companies operate in a complex regulatory environment. These companies are monitored by, and answer to, multiple federal agencies for a variety issues.

The Federal Drug Administration (FDA) regulates the availability and safety of drugs (both prescription and OTC) and medical devices, making every pharmaceutical company subject to its regulation and oversight.

In social media. the FDA is particularly concerned about adverse events and off-label use. Pharmaceutical companies are required to report any adverse events that come to their attention to the FDA. As for off-label use, pharma is prohibited from endorsing or encouraging any suggestion or advice given to use a drug in a manner other than what it was formally approved for by the FDA.

Pharma is also concerned about regulations related to HIPAA, or the Health Insurance Portability and Affordability Act. Administered by the Department of Health and Human Services’ (HHS) Office of Civil Rights (OCR), HIPAA enforces the privacy rights of individuals when it comes to their protected health information. The primary aim of HIPAA is to keep personally identifiable health information secure.

Pharma companies themselves are not listed among the groups HIPAA applies to (i.e., health plans, healthcare clearinghouses, and healthcare providers that conduct healthcare transactions electronically). Yet out of an abundance of caution, pharma operates on social media within HIPAA constraints.

 

Pharma bears some responsibility to make sure any influencers they engage makes the required FTC-mandated disclosures. – Source

Pharma is also subject to the same FTC guidelines for influencers and marketers as with any other industry. Ads and endorsements must be clearly identified. Relationships with influencers that include any exchange of value, monetary or otherwise, must be disclosed. Pharma bears the responsibility to make sure these requirements are met in all their social media campaigns.

Social Media Best Practices Within a Regulatory Environment

As a heavily regulated industry, pharma faces a couple of particular challenges when engaging in social media. Beyond the risks to their company’s reputation inherent in unmoderated social media, pharma must also manage the risk of regulatory violations. Both risks can be costly and disruptive to the company.

But, there are a few things pharmaceutical companies can do to address these risks.

Involve the company’s regulatory department in managing social media.

Do this up front, and not when a social media or regulatory crisis erupts.

The specialized knowledge the regulatory department brings to social media management is invaluable.

The regulatory department can untangle what is actually required from what is perceived as required. By providing operational guidelines and staff training, the regulatory department enables those producing social media content or managing the company’s social media accounts to do their job with confidence. When the inevitable social media crisis does erupt, the regulatory department can provide informed guidance on how to best respond to regulators.

By partnering with regulatory, many of the risks associated with social media can be mitigated – if not completely eliminated.

Strategize your approach to various topic types.

Do this up front, and again, not in the middle of a social media crisis.

Klick Health identifies 14 key topic types, what it calls “important buckets,” that pharma companies should be prepared to address in social media.

They are:

  • Positive health story
  • Negative health story
  • Financial information
  • Requests for more information
  • Adverse Events and product complaints
  • Response to suicide and suicidal posts
  • Positive page comments
  • Negative page comments
  • Treatment questions and comments
  • Alternative treatments
  • Mention of any branded product
  • Derogatory language
  • Offensive language
  • Threats

Being prepared to respond to potentially difficult topics on social media can help manage the risks. – Source

Strategizing how to respond in advance enables those managing the company’s social media accounts to respond more quickly and with greater assurance of minimizing the risks of missteps that will further damage the company’s reputation or regulatory standing.

Really listen to what social media is saying to pharma.

Social listening is a valuable tool. It allows companies to tap into the insights and desires of their customers. For pharma this means investigating the mindset of patients, their caregivers, and healthcare professionals.

Beyond finding fans and monitoring their reputations, pharmaceutical companies can also uncover potential social media risks early on and avoid being blindsided by a crisis.

Social Media Engagement in a Regulated Environment Can Be Managed

As pharma continues to engage in social media, it will reap the benefits that come from having a direct connection with its customers. Social media allows pharma to tap into its customers’ insights and desires, potentially influencing pharma’s future business direction.

Being in a regulated industry, however, does add more complexity to managing social media engagement for pharma. But this complexity can be properly managed, and the risks minimized with upfront planning and strategizing that is informed by regulatory knowledge.

How are you navigating the regulatory system with your current social media strategy?

The post Pharma Social Media Best Practices: Reaching Out Within Regulatory Restrictions appeared first on WEGO Health.

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Last weekend was the HealtheVoices conference and I had the pleasure of meeting over 100 Patient Leaders in 40 condition areas. Was it awesome? Yes. Was it overwhelming? Yes but so worth it.

This #FollowFriday is a special one, not only because we are featuring 4 Patient Leaders, but they’re all people I met at HealtheVoices who were also nominated for a WEGO Health Award in 2017. I can’t possibly say enough good things about these 4. Take a minute to follow them and learn about their lives because they all have so much fantastic information to share.

Oh and did we mention nominations for the 2018 WEGO Health Awards open later this month?!  Get your nominations ready because once May 22nd hits, it’s going to be a nomination extravaganza! Have a great weekend, everyone.

Alisha Bridges Psoriasis Patient Leader Website  | Twitter | Facebook

“My Purpose Motto: I want live for more than just for myself. I want to serve for a greater purpose. I want to change people’s hearts and create compassion among people the least understood through transparency of self, psoriasis advocacy, and dermatology.”

 

Matt Pappas Advocate for Survivors of Abuse Website | Twitter | Facebook

“Advocating for survivors of trauma and mental health awareness is a passion, and a labor of love. I consider it a privilege to be able to work with those who’ve endured so much in their past, and are now trying to put their lives back together. Often times those who have been through the trauma of abuse never had a voice or the ability to share their story. Giving them that platform to share not only promotes their own healing, but also validates others who resonate with their experiences. As a survivor, feeling alone is one of the main obstacles that stand in front of healing. My podcasts, blog posts, and videos serve as a place to help overcome those barriers and reach towards a life not defined by your past, but by your amazing resiliency and potential. Everyone deserves that opportunity. ”

Eileen Davidson RA Patient Leader Website | Twitter | Facebook | Instagram

” I believe in the change disease awareness brings forth to those who fall victim and their families to the misfortune of chronic illness. My diagnosis of Rheumatoid Arthritis and Osteoarthritis before my 31st Birthday introduced me to the hell that is a chronic and invisible illness all while with a toddler to take care of. Mothering a small child when I could barely care for myself proved to be one of the biggest and painful challenges of my life but my love for him triumphs all. My advocacy is my way of showing him that I refuse to ever give up on us, I am a fighter. As a mother my heart breaks knowing children can go through the anguish and fatigue that comes with the monster that Arthritis truly is while stuck with a crippling stigma of it only strikes the elderly and downplayed on its severity leaving many suffering in the dark. Having experienced my own personal problems and listening to the same problems of many chronically ill I’ve met in less than a year of advocacy I’ve decided to come forward to try and expose the stigma that is debilitating proper treatments, diagnosis, and funding for Arthritis. Disease awareness is important for a better future for the millions around the world suffering in silence from the villain that is Arthritis. They are not alone. ”

Gabe Howard Mental Health Patient Leader Website | Twitter | Facebook

“I’m a patient leader because I wanted discussions about my condition to be lead by somebody with my condition. I didn’t want to be talked about; I wanted to be talked to.”

If you’re feeling inspired by these top Patient Leaders, you should join our network!

When you join our Patient Leader Network you’re first to know about the new and exciting things we’re doing at WEGO Health. Not only will we reach out to you when we have paid opportunities in your condition area, but we’ll also connect you with other Patient Leaders so you can share ideas and help each other amplify your messages. What are you waiting for? Join today!

Did you miss our last #FollowFriday? You can catch up here!

The post Patient Leader #FollowFriday – May 4th, 2018 appeared first on WEGO Health.

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If you think that Instagram is just for sharing selfies and pictures of cute puppies, you’ve got another thing coming!

More than ever, Patient Leaders are taking the platform by storm and amplifying the patient voice through InstaStories, Hashtags and intriguing pictures.

Join us for this #PatientLeader webinar as we sit down with 3 Patient Leaders leading the way with their Instagram feed. Marla Murasko, Paige Rawl, and Racquel Dozier share an in-depth discussion on how to own Instagram and make the most of your advocacy.

#PatientLeader Webinar: Platform Power Tips for Patient Leaders- Instagram - YouTube

Don’t Miss:
  • How to create an Instagram strategy
  •  Using hashtags on Instagram
  • Creating visuals to attract attention to your Instagram posts
  • Easy-to-use apps to edit photos
  • Social media shortcuts – creating a workflow for your Instagram posts

As a bonus, we’ve compiled all of the Platform Power Tips discussed in this webinar into a Patient Leader Tip Sheet so you can start making the most of your Instagram account right away.

Learn the features you need to be taking advantage of, tips for engaging with your audience and the best tools and applications for having a successful feed!

And of course, be sure to follow us on Instagram and tag us in your latest posts for a chance to be featured.

Meet The Instagram #PatientLeader Panel
Racquel H. Dozier
Lupus Patient Leader 
Racquel H. Dozier is a Lupus Advocate and diligent in educating others about Systemic Lupus Erythematosus, commonly known as Lupus. She is the Founder and President of Lupus In Color a support group based out of Glen Allen, Virginia that provides inspiration, education, encouragement, empowerment and assistance and to lupus warriors. She is also the author of Butterflies of HOPE a book of encouragement to lupus warriors.
Marla Murasko
Down Syndrome Patient Leader 
As a Down Syndrome Advocate, Speaker, Author and Blogger, Marla lives and expresses her passion for Down Syndrome every day. Marla sees firsthand the challenges that individuals with Down Syndrome experience, and knows personally the barriers that parents face when advocating for the rights of their child. Dedicated to spreading awareness for inclusion and understanding for individuals with Down syndrome, she is active on her blog “Musings From A Special Needs Mom” and plays a proactive role in her community and in the classroom.As a recognized speaker, she has spoken on several different stages, but her proudest moment was when she had the privilege of speaking on the global stage at the United Nations for World Down Syndrome Day in 2017. Her life’s mission is to help make the world a more accepting place for her son and for all individuals with Down syndrome and it shows in all that she is involved with. So much, that her family will be launching a nonprofit called “Special & Determined”, whose mission is to help families of children with Down Syndrome by providing financial support for therapeutic services and early interventions, to build a path to a more accepting and inclusive society, where all individuals with Down Syndrome can contribute.
Paige Rawl
HIV/AIDS Patient Leader
Paige Rawl is an accomplished speaker and an inspirational figure for the tens of thousands of kids to whom she has spoken. Today, Paige is a national you advocate, antibullying crusader, and powerful American Red Cross certified HIV/AIDS educator. Paige has been featured in multiple national media outlets, including USA Today, People magazine, Seventeen magazine, Nick News with Linda Ellerbee, the Huffington Post, and POZ magazine. Rawl has been HIV positive since before, but she has never let her status be what defined her. One day in middle school she disclosed to her best friend her positive HIV status and within hours the bullying began. From that day forward Paige made it her mission to educate others and stand up for those who don’t have the voice to do so themselves. Throughout her years Paige began to write her memoir, POSITIVE: Surviving my bullies, Finding Hope, and Changing the World, sharing her story to help others relate and realize that you can turn bad situations into something good. She’s now working towards her goal of starting her own organization, Paige Power.

The post #PatientLeader Webinar: Platform Power Tips for Patient Leaders- Instagram appeared first on WEGO Health.

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The WEGO Health Patient Leader Network includes more than 100k patients and caregivers, across virtually all health conditions and topics. It’s comprised of health advocates, influencers and experts ready to transform healthcare by sharing their insights and expertise.
At WEGO Health, we are committed to elevating the voice and visibility of Patient Leaders. We strongly believe Patient Leaders are the future of healthcare and through connecting, listening and collaborating with them, we can solve some of healthcare’s toughest challenges.
It’s free to join the WEGO Health Patient Leader Network. By creating a WEGO Health account you’ll gain access to:
Paid Opportunities
When we’re looking for top patients to participate in Community Insight GroupsTruvio studies, influencer marketing campaigns, speaking engagements and other paid gigs, we start with our network first. We know that WEGO Health Patient Leaders not only have the patient-specific knowledge but are also voices that represent their entire community. WEGO Health Patient Leaders are people who dedicate their time to advocacy and awareness and we love to recognize them for just that!
Build Community
One of the major benefits of joining our network is the connections you can make with other Patient Leaders. From Twitter Chats to Webinars, we love to bring the network together. If you’re seeking inspiration, information or collaboration, we’d love to invite you to join our private WEGO Health Account Holders Facebook group! This wonderful community is a great way to make connections across condition areas and to learn from other Patient Leaders.
Increase Your Exposure
When you join our network, you’re first in line to get your mission out to the masses. We frequently feature Patient Leaders on our blog and our social channels, sharing your information with over 200,000 people! We also get opportunities to connect Patient Leaders with local media outlets. Your WEGO Health account helps us make sure we have the best contact information for you when this happens.
WEGO Health is your connection to top companies and organizations making change in healthcare. Let us help you share your story and get paid for your experience.

We’d love to welcome you to the WEGO Health Family! As a bonus, we’ll send you a FREE WEGO Health Patient Leader Kit to download once you create an account. 

The post Join the Patient Leader Network appeared first on WEGO Health.

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World Congress and WEGO Health teamed up recently during the Life Sciences Patient Congress to present the Patient Choice Awards. These awards recognize pharma organizations, collaborations, and programs that place a focus on the patient. They spotlight the true game changers, those who realize that each patient experience throughout the entire patient journey is of paramount importance.

So, who are these Patient Choice Award Winners? Read on to find out who they are and why they are considered the best of the best!

The Judging Panel

First, let’s take a look at the judging panel. The panel was comprised of our esteemed WEGO Health Patient Leader Network members. These Patient Leaders are past WEGO Health Award winners, finalists, and Advisory Board members.

And Here They Are – The Patient Choice Award Winners!

Most Influential Patient Advocacy Collaboration Award:

The winner in this category demonstrates meaningful ways to engage the patient voice, gather a real-world understanding of the burden of disease, and incorporate these patient perspectives to ensure the patient voice is championed internally and heard externally.

Embracing CARERS Initiative, EMD Serono – Source

Award Winner: Embracing CARERS Initiative, EMD Serono

The Embracing CARERS initiative truly stands out as the winner in this category. While a focus is typically placed on the patient when considering the patient experience, caregivers play a role that is largely unrecognized, and often misunderstood. As a result, resources in this area are limited. Embracing Carers seeks to provide much-needed support for caregivers. From their site:

Embracing Carers aims to fill the need for better support and recognition of caregivers. We are focused on improving caregivers’ health and wellness, while increasing awareness and support for them within healthcare systems around the globe.”

Most Influential Patient Access Initiative Award:

The winner in this award category demonstrates a clear understanding of the patient journey. It addresses financial and access barriers, and provides comprehensive resources that allow patients and healthcare providers to navigate and move past the access barriers to make progress in the reimbursement process.

MerckEngage®, Merck – Source

Award Winner: MerckEngage®, Merck

MerckEngage® is an initiative that supports the whole patient. A site that is easily-navigable, you’ll find condition information and advice for successful doctor visits, fitness and healthy living tips, and insurance resources to provide comprehensive support throughout the entire patient journey.

Excellence in Patient Engagement Award:

The award winner in this category is a project that offers inter-disciplinary ways to co-create health solutions, which engage and activate patients to be an active participant in their health management.

ACCELERATE! – AMAIC, ViiV Healthcare – Source

Award Winner: ACCELERATE! – AMAIC, ViiV Healthcare

“As Much As I Can” (AMAIC) is an innovative initiative that encourages dialog about “the gaps in HIV prevention, treatment and care for Black gay and bisexual men.” A project that focuses on two of the hardest hit areas of the HIV epidemic, Baltimore, MD, and Jackson, MS, this immersive theater production brings the action from the stage into the audience. There is definite benefit in using the immersive approach. According to the AMAIC Fact Sheet, it “triggers a response that is significantly different from passive viewing and has been shown to change how the subject or subject matter is perceived.”

2018 Patient Centricity Trendsetter Award:

This award is given to an individual who has gone above and beyond in leading internal initiatives that promote a patient-centered culture and forge collaborations with key stakeholders to promote and enhance the patient experience.

Paul Murasko, Sunovion – Source

Award Winner: Paul Murasko, Sunovion

Currently Sr. Director of Multi-Channel Marketing for Sunovion Pharmaceutical, Paul Murasko has a breadth of experience in the area of pharmaceuticals. In addition to his professional experience, however, he has given of his time for over 20 years in various capacities from serving as Vice Chair for the Tri-County United Way to development of Special and Determined, a foundation that provides much needed support to families with children who have Down Syndrome. Paul is a true champion for all patients and their families.

A Big Thank You!

WEGO Health is very happy to be able to recognize each of these amazing award winners. We also extend our congratulations and heartfelt thanks to all of the nominees. You are all rock stars to us. You recognize and understand the needs of patients and caregivers – on all levels. So often, when we think of the pharmaceutical industry, we think only of the medicines that they produce. It’s heartening to show their patient-centric side – the side that is more holistically improving the patient experience. So, again, thank you!

The post Patient Choice Award Winners: Improving the Patient Experience appeared first on WEGO Health.

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