Spring PKD Advocacy Days Elevate Community’s Needs
PKD Foundation Blog
by Sydney Johnston
1M ago
Published on May XX, 2024 | This spring, the PKD Foundation and local advocates brought the needs of the polycystic kidney disease (PKD) community to Capitol Hill. Through two events, these passionate advocates elevated PKD-centric policies to Congress and called for vital research funding to improve the lives of people with PKD. National Kidney Month […] The post Spring PKD Advocacy Days Elevate Community’s Needs appeared first on PKD Foundation ..read more
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How You Can Make a Difference on Virtual Advocacy Day 2024
PKD Foundation Blog
by Sydney Johnston
3M ago
Published March 8, 2024 | It’s that time of year again. The PKD Foundation is excited to announce that registration is now open for Virtual Advocacy Day. On Tuesday, April 9, the entire PKD community can join this free event to engage with federal lawmakers and their staff in support of policies that will transform […] The post How You Can Make a Difference on Virtual Advocacy Day 2024 appeared first on PKD Foundation ..read more
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Understanding Trials on Ketogenic Diet Interventions for PKD
PKD Foundation Blog
by Sydney Johnston
7M ago
Published on November 20, 2023 | Each year, the PKD Foundation funds research grants and fellowships to increase understanding of the genetic and pathological processes involved in PKD and to accelerate the development of potential therapies for PKD patients. In 2020, that included Roman-Ulrich Müller, M.D., a researcher investigating the ketogenic diet and PKD. In 2019, […] The post Understanding Trials on Ketogenic Diet Interventions for PKD appeared first on PKD Foundation ..read more
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New Legislation Offers $5,000 Tax Credit to Living Organ Donors
PKD Foundation Blog
by Sydney Johnston
8M ago
Published on November 1, 2023 | Today, Representatives Joe Wilson (R-SC-02) and Jerrold Nadler (D-NY-12) introduced the Living Organ Donor Tax Credit Act of 2023. If it passes, this legislation would provide a one-time, reimbursable tax credit of up to $5,000 to kidney and other living organ donors who choose to donate life-saving organs.   […] The post New Legislation Offers $5,000 Tax Credit to Living Organ Donors appeared first on PKD Foundation ..read more
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Securing the U.S. Organ Procurement and Transplantation Network Act Becomes Law
PKD Foundation Blog
by Sydney Johnston
9M ago
Published on October 3, 2023 | On Friday, September 22, 2023, President Biden signed the Securing the U.S. Organ Procurement and Transplantation Network Act (P.L. 118-140) into law. Through this law, we’ll modernize and improve the Organ Procurement and Transplantation Network (OPTN).   The PKD Foundation was among several kidney care stakeholder organizations that endorsed […] The post Securing the U.S. Organ Procurement and Transplantation Network Act Becomes Law appeared first on PKD Foundation ..read more
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How You Can Join the Advocacy Champions Network
PKD Foundation Blog
by Sydney Johnston
10M ago
Published on September 14, 2023 | Aside from funding research, one of the best ways to drive change in the PKD community is through advocacy. One way you can take part in PKD advocacy is by joining the Advocacy Champions Network (ACN). Applications are now open for the 2023-2024 ACN program year! Join other PKD […] The post How You Can Join the Advocacy Champions Network appeared first on PKD Foundation ..read more
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Using Your Voice to Spread PKD Awareness
PKD Foundation Blog
by Sydney Johnston
10M ago
Published on September 5, 2023 | Today, we celebrate PKD Awareness Day. While polycystic kidney disease (PKD) affects millions of lives worldwide, yet its awareness often remains overshadowed by more well-known health concerns. Every September 4, PKD Awareness Day serves as a crucial opportunity to educate, advocate, and inspire change. It’s a day to rally […] The post Using Your Voice to Spread PKD Awareness appeared first on PKD Foundation ..read more
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5 Powerful Updates to the ADPKD Registry
PKD Foundation Blog
by Sydney Johnston
11M ago
Published on August 3, 2023 | In 2019, the PKD Foundation launched the ADPKD Registry, the first national patient-centered registry for people with autosomal dominant polycystic kidney disease. Four years later, the Registry has successfully opened much-needed avenues for discussion and data exchange between patients and researchers. Last week, the Foundation launched an updated version […] The post 5 Powerful Updates to the ADPKD Registry appeared first on PKD Foundation ..read more
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Why Did the FALCON Clinical Trial End?
PKD Foundation Blog
by Sydney Johnston
1y ago
Published on May 23, 2023 | On May 10, the ongoing FALCON clinical trial was terminated early. FALCON is a Phase 3 clinical study evaluating the effectiveness and safety of bardoxolone methyl (an oral investigational drug) in patients with ADPKD. The study aimed for 850 participants to be studied for two years. But why was […] The post Why Did the FALCON Clinical Trial End? appeared first on PKD Foundation ..read more
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3 Questions About Virtual Advocacy Day 2023
PKD Foundation Blog
by Sydney Johnston
1y ago
  Published on May 11, 2023 | Last month, PKD advocates from coast to coast participated in Virtual Advocacy Day 2023. Through virtual meetings, patients, friends, researchers, and PKD Foundation staff united to share our community’s needs with Congress. For those who couldn’t attend, answers to these three questions will catch you up.   1. […] The post 3 Questions About Virtual Advocacy Day 2023 appeared first on PKD Foundation ..read more
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