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WASHINGTON, Aug. 26, 2021 /PRNewswire/ — The American Affiliation of Kidney Sufferers (AAKP), the largest unbiased kidney affected person group in the USA, and its strategic companions at the George Washington College (GW) Faculty of Drugs and Well being Sciences (SMHS) proceed to make a novel impression within the worldwide battle towards kidney illnesses. Their 2021 annual World Summit on Kidney Illness Improvements targeted on increasing affected person client decisions and improved well being outcomes, engaged a mixed viewers of over 20,000 viewers throughout 80 nations, exceeded their 2020 digital attendance file established on the top of the COVID-19 pandemic, and continues to attract viewers worldwide to their online content. The World Summit is a key element of AAKP’s The Decade of the Kidney™, an AAKP international initiative (read article) launched in 2019 for the 2020-2030 decade to assist U.S. and worldwide policymakers higher handle the devastating human and societal prices of kidney illnesses primarily based on patient-defined priorities.
The World Summit has accelerated engagement in an increasing worldwide consortium of influencers, led by affected person shoppers and advocates, dedicated to a brand new period in kidney drugs marked by extra inclusive medical trials, better use of affected person perception information, personalised drugs, and disruptive applied sciences together with synthetic implantable and wearable kidneys. The patient-led consortium contains tutorial and medical researchers, medical trial designers, innovators, capital market traders, corporations, non-governmental and faith-based organizations, in addition to elected and appointed authorities leaders throughout the globe. Kidney sufferers worldwide are demanding an finish to outdated dialysis care, characterised by staggeringly excessive mortality charges, and better entry to new merchandise and options aimed toward detecting, stopping, and treating kidney illnesses earlier and in methods that enhance high quality of life and reduce dependency and disease-related unemployment. They’re additionally organizing and coordinating their coverage and grassroots efforts in a complicated effort to advance extra frequent sense regulatory and fee reforms that prioritize affected person wants and absolutely assist the well timed entry of recent, secure merchandise into international client markets. Based mostly on the continued success and quickly increasing curiosity in The World Summit, AAKP and GWU have already opened pre-registration for the Could 2022 Global Summit on Kidney Disease Innovations. All 2021 World Summit digital displays can be found OnDemand via the AAKP website and AAKP YouTube channel.
Dr. Dominic Raj, Co-Chair of The World Summit, a Professor of Drugs, Biochemistry and Genetics and Biostatistics and Epidemiology, and Director of the Division of Kidney Illnesses and Hypertension on the George Washington College Faculty of Drugs and Well being Sciences, said, “As a researcher in molecular biology and genetics, I search to personalize drugs by genes and molecular pathways, however I feel it is extra necessary to personalize by affected person wants. This, I consider, is the key take residence message from The World Summit and I’m very pleased with my colleagues throughout the globe who’re actively incorporating the distinctive insights of kidney sufferers of their analysis and discovery of recent therapies to forestall and deal with the rising unfold of kidney illnesses.”
Hilde Vautmans, Member of the European Parliament (MEP), Chair of MEP Kidney Well being, and Deputy Coordinator for the Committee on International Affairs for a Renew Europe (EU) supplied a virtual presentation by which she praised kidney sufferers worldwide for his or her efforts to work alongside authorities leaders within the battle towards kidney illnesses. Additional, Vautmans invited better cooperation amongst elected leaders within the European Parliament and the U.S. Congress, particularly amongst like-minded members of the U.S. Congressional Kidney Caucus, stating, “This battle is troublesome. And I can converse from expertise right here, however […] change is feasible […] however we will and need to act extra. In Europe but in addition in the US. I all the time say we’d like extra consciousness, extra funding and extra innovation. At this time I wish to add a fourth factor and that’s collaboration, as a result of as all of us are conscious and all are witnessing, illnesses know no borders. So, let’s work collectively […]We share a typical purpose, on each side of the Atlantic: We should additional enhance the lives of individuals with Kidney Illness!”
The 2021 World Summit included over 15 panels that includes over 40 affected person and medical specialists together with a menu 29 professional movies masking COVID-19 kidney-related points, range in medical trials, APOL-1 genetic analysis, diabetic kidney illness (DKD), diet, and telemedicine. Executives from high corporations in the kidney area underscored the significance and worth of affected person insights in science, discovery, and the improvement of recent medicine, gadgets, and diagnostics. Emphasizing the important thing function sufferers play within the new period of kidney drugs had been leaders from Bayer Prescribed drugs, Baxter Worldwide Inc., bioMérieux, CareDx, Inc., CSL Behringer, Novartis, and Sangamo Therapeutics, Inc. They had been joined by key coverage and innovation leaders together with Barbara L. Bass, MD, Vice President for Well being Affairs, Dean of the GW Faculty of Drugs and Well being Sciences, and CEO of the GW Medical College Associates (USA); Vivekanand Jha, MBBS, MD, DM, PHD, FRCP, FAMS; Govt Director, The George Institute for World Well being (AU) and President, Worldwide Society of Nephrology (IND); Fokko Wieringa, PhD, Principal Scientist, IMEC of The Netherlands and the Dutch Kidney Basis (EU) and a member of The Kidney Well being Initiative (USA); Murray Sheldon, MD, Affiliate Director for Expertise and Improvements, Heart for Units and Radiological Well being, U.S. Meals and Drug Administration (USA); Jack Kalavritinos, Founder and Principal, JK Consulting and member of the APCO Worldwide Worldwide Advisory Council and Well being Advisory Board (USA).
Richard Knight, President of the American Affiliation of Kidney Sufferers, a former hemodialysis affected person and 14-year kidney transplant recipient, said, “Kidney illness is a devastating illness that’s quickly increasing and negatively impacting sufferers, households, and economies all through the world. Future improvements in kidney drugs depend on better affected person engagement via absolutely inclusive medical trials and analysis, and the GW Faculty of Drugs and Well being Sciences is a longtime international chief on this subject. I thank Dean Dr. Barbara Bass, Dr. Dominic Raj, and our new European Union ally Hilde Vautmans for his or her deep respect for sufferers and their concerted efforts to unite sufferers, clinicians, and policy-makers within the battle towards all kidney illnesses.” Knight (read CJASN article) is a former U.S. Congressional workers member and enterprise guide who serves on the Nationwide Institutes of Well being (NIH), Nationwide Institute of Diabetes and Digestive and Kidney Illnesses (NIDDK) Advisory Council, and because the Co-Chair of the Neighborhood Engagement Committee for the Kidney Precision Drugs Undertaking (KPMP).
Paul T. Conway, Co-Chair of The World Summit and AAKP Chair of Coverage and World Affairs, a former peritoneal dialysis affected person and 24-year kidney transplant recipient, said, “AAKP and our buddy and ally Dr. Dominic Raj envisioned The World Summit on Kidney Improvements as a novel worldwide occasion aimed toward accelerating cooperation amongst sufferers, researchers, clinicians, and coverage professionals. Kidney affected person shoppers worldwide demand and deserve far better care selection and are nicely conscious of the worth they carry as companions to pioneers growing the subsequent era of diagnostics, gadgets, and biologics. AAKP has expanded our collaborations with affected person teams worldwide to advance innovation and to assist all who share our sense of urgency and intent to transcend legislative, regulatory, and fee boundaries that restrict care selection and delay entry of recent, secure therapies into the worldwide client markets.” Conway (read CJASN article) is a former Chief of Workers of the U.S. Division of Labor and serves on the Exterior Professional Panel of Nationwide Institutes of Well being (NIH), Nationwide Institute of Diabetes and Digestive and Kidney Illnesses (NIDDK), Kidney Precision Drugs Undertaking (KPMP), the American Board of Inside Drugs’s Nephrology Specialty Board, and is a Affected person Voice Editor for The Scientific Journal of the American Society of Nephrology.
AAKP has formal partnerships with the a number of worldwide kidney affected person organizations together with in assist of The World Summit, The Decade of the Kidney™, and the rising worldwide kidney innovation consortium, together with: Argentina-based Asociacion Solidaria de Insuficientes Renales (ASIR); European Kidney Patients’ Federation (EKPF) and the European Kidney Health Alliance (EKHA); and United Kingdom-based Renal Patient Support Group. AAKP can be saying a number of further international partnerships all through the rest of 2021 and 2022. AAKP leaders and their international allies have carried the important thing messages of The World Summit into different international boards, together with the College of Washington’s Heart for Dialysis Innovation’s latest IDEAS Summit, the place Dr. Murray Sheldon of the U.S. Meals and Drug Administration carried out a presentation on the expanding international kidney innovation consortium. Future displays on the important thing learnings and messages of The World Summit and the worldwide kidney innovation consortium can be carried out on the AAKP Annual National Patient Meeting September 24-25, 2021, and on the American Society of Nephrology’s, 2021 Kidney Week, November 4-7, the most important kidney skilled convention on the planet. Voices in assist of AAKP’s increasing international partnerships and worldwide collaborations embrace:
Mr. Colm Clifford, kidney affected person and AAKP World Ambassador within the Republic of Eire: “Change occurs when a collective voice sends a robust message that change is required. This begins from the grassroots. Whereas it might ultimately be signed off with the stroke of a pen, it is the robust collective voice that may’t be ignored that drives that to occur. In kidney illness, after The World Summit, I am assured we actually are transferring ahead and it is an thrilling time to be concerned.”
Daniel Gallego, President of the European Kidney Sufferers’ Federation (EKPF): “We’re more than pleased that the AAKP reached out to us to implement the collaboration of kidney sufferers worldwide to essentially give a push for innovation and new therapies that may improve high quality of lifetime of kidney sufferers, contributing to develop our day by day life actions. EKPF strongly believes that in creating these therapies, sufferers needs to be included and within the driver’s seat to succeed in subsequent stage therapies. Collectively we will create and lengthen a platform that’s answerable for the long-overdue innovation that kidney sufferers are ready for.”
Raymond Vanholder, President of the European Kidney Well being Alliance (EKHA): “Collaboration for enchancment of kidney therapies can actually profit by transferring boundaries. We’re delighted with the growth of our worldwide collaboration by teaming up with AAKP. At EKHA we strongly consider within the empowerment of sufferers to reinforce high quality of life the place attainable. We due to this fact adopted their ‘Decade of the Kidney’ program to create consciousness for the unmet wants of kidney sufferers. An necessary a part of this collaboration will exist in setting the political agenda on the stage of the EU and USA to push for actual revolutionary therapies and corresponding funding to appreciate them.”
Dr. Maria Eugenia Vivado Duran, President of the Argentina-based Asociación Solidaria de Insuficientes Renales of Buenos Aires; AAKP World Ambassador: “ASIR joins along with AAKP in assist of the rights of the kidney sufferers and to share in efforts to additional medical improvements that may higher forestall and deal with kidney illnesses and enhance the standard of life for kidney sufferers.” Dr. Vivado Duran, a pediatrician and AAKP World Ambassador, was identified with kidney illness in 1979 throughout her second being pregnant. She was on hemodialysis for a few years and in 2001, acquired a kidney transplant from a deceased donor, permitting her to proceed working for sufferers, educating the neighborhood, and having fun with her household. She has been president of ASIR for 4 consecutive phrases and does all the things in gratitude to her nameless kidney donor.
Dr. Shahid Nazir Muhammad, Specialist Biomedical Scientist, The College of the West of England (UWE) and Tutorial Lead, on behalf of The Renal Affected person Help Group (RPSG), United Kingdom: “Future analysis integrating perceptions to acknowledge CKD as a situation with numerous morbidities and investigations to discover instructional wants is mission crucial. The Renal Affected person Help Group (RPSG) is a spot the place consciousness and analysis meet and encourages healthcare service and assist in understandable proportions. Innovation is nice to an extent. Nonetheless, well timed and focused training relating CKD and suggestions with a strong focus is the place greatest apply between pediatric and grownup nephrology, tackling well being inequalities is pinnacle to make sure that CKD sufferers aren’t forgotten and turn out to be unpeople (disenfranchised), and there may be kidney illness consciousness on a global stage.”
Ms. Vasundhara Raghavan, caregiver to a son with kidney illness and the AAKP World Ambassador within the United Arab Emirates: “An worldwide consortium of kidney affected person organizations can be a catalyst to drive many improvements and herald much-needed adjustments within the kidney affected person ecosystem. The consortium may also help execute cross border therapies for paired kidney transplants attainable via a global donor financial institution. Sharing of greatest practices, information, and assets will assist the kidney affected person neighborhood immensely. A collaborative platform akin to this may assist us collect momentum in kidney analysis, affected person advocacy, and supply monetary assist to needy sufferers. The wants of kidney sufferers are greatest expressed by them. They’re going via the arduous journey and having firsthand information of what works greatest for them. Sufferers driving these discussions will assist convey conclusive choices on coverage issues straight impacting them. By way of this platform they may have a channel to voice their opinions and get to share their experiences to a wider neighborhood. Getting sufferers concerned early on in these discussions is extraordinarily crucial and the worth addition that they may present to the dialog can be vastly sensible.”
AAKP and GW SMHS thank their 2021 World Summit sponsors. Gold Degree: Horizon Therapeutics and Travere Therapeutics; Silver Degree: CareDx, Inc.; Patron Degree: Hansa Biopharma and Sanofi Genzyme; and Supporting Degree: AstraZeneca and Eurofins Transplant Genomics. Info on the 2022 World Summit is on the market at https://aakp.org/programs-and-events/global-summit/.
About the American Affiliation of Kidney Sufferers (AAKP): Since 1969, AAKP has been a patient-led group driving coverage discussions on kidney affected person client care selection and therapy innovation. By 1973, AAKP sufferers had collaborated with the U.S. Congress and White Home to determine dialysis protection for any individual struggling kidney failure, a U.S. taxpayer supported effort that has saved over a million lives. In 2018, AAKP established the most important U.S. kidney voter registration program, KidneyVoters™. Over the previous decade, AAKP sufferers have helped acquire lifetime transplant drug protection for kidney transplant recipients (2020); new patient-centered insurance policies by way of the White Home Govt Order on Advancing American Kidney Well being (2019); new job protections for dwelling organ donors from the U.S. Division of Labor (2018); and Congressional laws permitting HIV optimistic organ transplants for HIV optimistic sufferers (2013). Observe AAKP on social media at @kidneypatient on Fb, @kidneypatients on Twitter, and @kidneypatients on Instagram, and go to www.aakp.org. The World Summit on Kidney Illness Improvements is produced by AAKP’s nationwide strategic media accomplice, Briar Patch Media, which supplies inventive consulting and full-service media video manufacturing and post-production for companies, non-profit organizations, people all through the U.S., and several other worldwide areas.
About the George Washington College Faculty of Drugs and Well being Sciences: Based in 1824, the George Washington College Faculty of Drugs and Well being Sciences (SMHS) was the first medical faculty in the nation’s capital and is the 11th oldest in the nation. Working collectively in our nation’s capital, with integrity and resolve, the GW SMHS is dedicated to enhancing the well being and well-being of our native, nationwide, and international communities. Go to their web site at smhs.gwu.edu.
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SOURCE American Affiliation of Kidney Sufferers
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