Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned from treating patients, his interests in the global disparity of care, and his thoughts of the Michael Jordan documentary, The Last Dance! Join us to get to know Dr. Valentino a little better! Welcome to Episode 39 - or our Get to Know the Expert Ep ..read more

The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding disorder community. Dr. Valentino shares how NHF is addressing the current COVID pandemic, NHF’s national research agenda, and how COVID could impact the shift in treatment in hemophilia. We’ll also chat about the Bleeding Disorder Conference going ..read more

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO of Hemophilia Federation of America (HFA), Sharon Meyers, as she begins her tenure at the organization. Sharon shares how she became involved in non-profit work, her passion and philosophy on fundraising, and how she became involved within the bleeding disorder community! Join us to hear more about Sharon’s personal journey and what makes her tick! A fun episode of Ask t ..read more

During this period of unprecedented turmoil and uncertainty, the bleeding disorder community has found comfort in the Hemophilia Federation of America’s (HFA) messaging and voice. Newly-minted CEO of HFA, Sharon Meyers, joins us to share the behind the scenes work HFA has done to prepare statements, resources, and education during the COVID pandemic. She shares how HFA has set up a COVID-19 Relief Fund, as well as utilizing their foundational Helping Hands financial assistance program to provide support to community members during the crisis. Sharon stops by to share her vision for HFA going f ..read more

Join us for our “Get to Know the Expert” episode featuring Brian Ragaishis! Brian is a teenager with vWD who created the website Live Smart, Play Smart, a community where other teens affected by bleeding disorders can share their story. In today’s episode, we hear about what it was like for Brian when he was diagnosed with vWD and how he felt isolated from his friends. How did he manage and why did he think it was important for other teens to share their story? Check out this great episode and if you know an amazing teen affected by a bleeding disorder doing incredible things for their communi ..read more

So much of our community programming and education is focused around teenagers and yet oftentimes our teenagers seem like mysteries to us. What is it like being a teen with a bleeding disorder and what would make their lives easier? To celebrate Bleeding Disorders Awareness Month we asked teen, Brian Ragaishis, to join us on Ask the Expert to share why he created Live Smart, Play Smart, a website that creates community for other teens affected by bleeding disorders by telling their story. Brian, a former Teen Impact Award winner, joins us to share how the idea was born and why it was so import ..read more

In our first month of Ask the Expert’s new format we welcome you to our extended conversation with Dr. Jonathan Roberts, a hematologist with the Bleeding and Clotting Disorders Institute. In this bonus episode, we continue our conversation with Dr. Roberts where we learn how growing up with hemophilia led him to a passion for science and later on, medical school. We’ll hear his thoughts on what it has been like to be a physician and a patient during this paradigm shift in treatment for hemophilia and his thoughts about getting into the medical field for those interested in science. Join us as ..read more

Growing up with hemophilia shaped how Dr. Jonathan Roberts encourages his patients every day. As the Associate Medical Director of the Bleeding and Clotting Disorder Institute, Dr. Roberts as had the opportunity to give back to the community he is personally connected to. Join us for a unique Ask the Expert with Dr. Roberts as he shares his thoughts on future treatments for hemophilia, his research on creating a better assay for von Willebrands diagnosis, and his passion for encouraging patients to become their own experts on their healthcare. A must listen for the bleeding disorder community ..read more

As we begin the new year many of us are encouraged to follow through on goals we have set for ourselves, but the stress involved with sticking to it and following through can affect our mental and emotional well-being. Debbie de la Riva from Mental Health Matters Too stops by to share some things to keep in mind about creating actual habit and behavior change as we work towards our goals. As a community leader encouraging awareness and education around mental health, Debbie will also share what we can expect in 2020 and her growing partnership with Believe Limited and the National Hemophilia F ..read more

von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience ..read more