BREAKTHROUGH: Hope Now for Rare Kidney Diseases (Rare Kidney Disease Foundation)

Session: BREAKTHROUGH: Hope Now for Rare Kidney Diseases
Moderator: Paul T. Conway, AAKP Chair, Policy & Global Affairs; Global Summit Co-Chair, kidney transplant recipient (USA)
Speaker:
• Richard R. Nelson, Co-Founder and Chair, Rare Kidney Disease Foundation (USA)
• Joe Morden, Volunteer, Rare Kidney Disease Foundation (USA)
• Anna Greka, PhD, MD; Professor, Harvard Medical School, Mass General Brigham Institute
Member; Broad Institute of MIT and Harvard; Founding Director, Broad Kidney Disease
Initiative; founder & Chair, Broad Ladders to Cures Accelerator (USA)
The American Association of Kidney Patients (AAKP), the largest independent kidney patient organization in the USA, and its strategic partner, The George Washington University (GW) School of Medicine & Health Sciences (SMHS), hosted their 6th Annual Global Summit on Kidney Disease Innovations "Vox Populi: The Time is Now to Prevent and Cure Kidney Diseases" on July 16-17, 2024.
The Global Summit encourages participants to collaborate to advance science and medical innovation, advocate for more common-sense regulatory and payment policies, and to remove barriers to new life-saving treatments and cures. AAKP believes patients have a valid and rightful voice in the medical and policy decisions that impact their lives.
The 6th anniversary meeting broke all previous event records - reaching 107 countries in 2024 and engaging audiences in the tens of thousands through real-time and OnDemand programming. Over the course of the past six years, the Global Summit has conducted a cumulative total of 90 expert sessions, involving over 300 speakers from 70 countries, while generating more than 100 hours of broadcast quality filmed programming. The Global Summit is the largest patient-led kidney innovations summit in the world.
Kidney disease is both a global healthcare and workforce issue. Over 840 million people suffer from kidney disease and failure worldwide. In the United States, over 37 million people suffer from the disease, over 700,00 live with kidney failure, and nearly 100,000 await a kidney transplant. The cost of kidney disease in America alone is estimated at over $100 billion annually. This cost does not include the additional high costs to patients, families, and taxpayers of unemployment, disability, dependency, and premature death. Those costs are often a direct consequence of burdensome and outdated status quo treatments, especially dialysis. AAKP believes the full, true costs of legacy kidney technologies are grossly underestimated and should be weighed as new technologies emerge. AAKP works closely with U.S. Congressional leaders to ensure patient access to kidney innovations.
About AAKP: Since 1969, AAKP has been a patient-led organization driving policy discussions on kidney patient care choice and medical innovations to improve patient lives and prevent avoidable illness, disability and death. AAKP advocates played a central role in the Congressional authorization of Medicare coverage for dialysis and transplantation (1972), signed by President Richard Nixon (1973), which evolved into the modern End Stage Renal Disease Program. Over the past decade, AAKP patient advocates have helped advance the passage of the bipartisan law modernizing the Organ Procurement and Transplant Network (OPTN) via greater competition and oversight (2023); lifetime transplant drug coverage for kidney transplant recipients (2020); the presidential Executive Order on Advancing American Kidney Health (2019); new job protections for living organ donors under the Family Medical Leave Act (FMLA) via the U.S. Department of Labor (2018); and Congressional legislation allowing HIV-positive organ transplants for HIV-positive patients (2013).
Follow AAKP on social media at @kidneypatient on Facebook, @kidneypatients on Twitter, and @kidneypatients on Instagram, and visit www.aakp.org for more information.