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Affected person Wants and Insights Drive New Period of International Kidney Analysis, Discovery, and Personalised Remedies
WASHINGTON, Sept. 17, 2021 /PRNewswire/ — The American Affiliation of Kidney Sufferers (AAKP), the largest impartial kidney affected person group in the USA, and its strategic companions at the George Washington College (GW) College of Medication and Well being Sciences (SMHS) proceed to make a novel affect within the worldwide battle towards kidney ailments. Their 2021 annual International Summit on Kidney Illness Improvements targeted on increasing affected person shopper decisions and improved well being outcomes, engaged a mixed viewers of over 20,000 viewers throughout 80 international locations, exceeded their 2020 digital attendance document established on the peak of the COVID-19 pandemic, and continues to attract viewers worldwide to their online content. The International Summit is a key part of AAKP’s The Decade of the Kidney™, an AAKP world initiative (read article) launched in 2019 for the 2020-2030 decade to assist U.S. and worldwide policymakers higher deal with the devastating human and societal prices of kidney ailments primarily based on patient-defined priorities.
The International 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 scientific trials, higher use of affected person perception knowledge, customized drugs, and disruptive applied sciences together with synthetic implantable and wearable kidneys. The patient-led consortium consists of tutorial and medical researchers, scientific 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 Kidney sufferers worldwide are demanding an finish to outdated dialysis care, characterised by staggeringly excessive mortality charges, and higher entry to new merchandise and options aimed toward detecting, stopping, and treating kidney ailments 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 latest, secure merchandise into world shopper markets. Primarily based on the continuing success and quickly increasing curiosity in The International Summit, AAKP and GWU have already opened pre-registration for the Could 2022 Global Summit on Kidney Disease Innovations. All 2021 International Summit digital shows can be found OnDemand by means of the AAKP website and AAKP YouTube channel.
Dr. Dominic Raj, Co-Chair of The International Summit, a Professor of Medication, Biochemistry and Genetics and Biostatistics and Epidemiology, and Director of the Division of Kidney Ailments and Hypertension on the George Washington College College of Medication 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 believe it is extra essential to personalize by affected person wants. This, I imagine, is the key take house message from The International 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 latest therapies to forestall and deal with the rising unfold of kidney ailments.”
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 through which she praised kidney sufferers worldwide for his or her efforts to work alongside authorities leaders within the struggle towards kidney ailments. Additional, Vautmans invited higher 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 tough. And I can communicate 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. Right now I need to add a fourth aspect and that’s collaboration, as a result of as all of us are conscious and all are witnessing, ailments know no borders. So, let’s work collectively […]We share a typical objective, on either side of the Atlantic: We should additional enhance the lives of individuals with Kidney Illness!”
The 2021 International Summit included over 15 panels that includes over 40 affected person and medical consultants together with a menu 29 knowledgeable movies protecting COVID-19 kidney-related points, variety in scientific trials, APOL-1 genetic analysis, diabetic kidney illness (DKD), diet, and telemedicine. Executives from high corporations in the kidney house underscored the significance and worth of affected person insights in science, discovery, and the improvement of latest medication, units, and diagnostics. Emphasizing the important thing position sufferers play within the new period of kidney drugs had been leaders from Bayer Prescription 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 College of Medication and Well being Sciences, and CEO of the GW Medical School Associates (USA); Vivekanand Jha, MBBS, MD, DM, PHD, FRCP, FAMS; Govt Director, The George Institute for International 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 Know-how and Improvements, Middle 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 rely upon higher affected person engagement by means of absolutely inclusive scientific trials and analysis, and the GW College of Medication and Well being Sciences is a longtime world chief on this discipline. 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 struggle towards all kidney ailments.” Knight (read CJASN article) is a former U.S. Congressional workers member and enterprise marketing consultant who serves on the Nationwide Institutes of Well being (NIH), Nationwide Institute of Diabetes and Digestive and Kidney Ailments (NIDDK) Advisory Council, and because the Co-Chair of the Group Engagement Committee for the Kidney Precision Medication Undertaking (KPMP).
Paul T. Conway, Co-Chair of The International Summit and AAKP Chair of Coverage and International Affairs, a former peritoneal dialysis affected person and 24-year kidney transplant recipient, said, “AAKP and our good friend and ally Dr. Dominic Raj envisioned The International 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 higher care alternative and are properly conscious of the worth they bring about as companions to pioneers creating the subsequent technology of diagnostics, units, 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 obstacles that restrict care alternative and delay entry of latest, secure remedies into the worldwide shopper 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 Ailments (NIDDK), Kidney Precision Medication Undertaking (KPMP), the American Board of Inside Medication’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 International 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 will probably be asserting a number of further world partnerships all through the rest of 2021 and 2022. AAKP leaders and their world allies have carried the important thing messages of The International Summit into different world boards, together with the College of Washington’s Middle for Dialysis Innovation’s current IDEAS Summit, the place Dr. Murray Sheldon of the U.S. Meals and Drug Administration performed a presentation on the expanding international kidney innovation consortium. Future shows on the important thing learnings and messages of The International Summit and the worldwide kidney innovation consortium will probably be performed 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 biggest kidney skilled convention on the planet. Voices in assist of AAKP’s increasing world partnerships and worldwide collaborations embody:
Mr. Colm Clifford, kidney affected person and AAKP International 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 sturdy collective voice that may’t be ignored that drives that to occur. In kidney illness, after The International 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 actually give a push for innovation and new therapies that may improve high quality of lifetime of kidney sufferers, contributing to broaden our each day life actions. EKPF strongly believes that in creating these therapies, sufferers must be included and within the driver’s seat to succeed in subsequent degree therapies. Collectively we will create and lengthen a platform that’s liable 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 enlargement of our worldwide collaboration by teaming up with AAKP. At EKHA we strongly imagine within the empowerment of sufferers to reinforce high quality of life the place potential. We subsequently adopted their ‘Decade of the Kidney’ program to create consciousness for the unmet wants of kidney sufferers. An essential a part of this collaboration will exist in setting the political agenda on the degree of the EU and USA to push for actual modern therapies and corresponding funding to understand them.”
Dr. Maria Eugenia Vivado Duran, President of the Argentina-based Asociación Solidaria de Insuficientes Renales of Buenos Aires; AAKP International 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 ailments and enhance the standard of life for kidney sufferers.” Dr. Vivado Duran, a pediatrician and AAKP International Ambassador, was identified with kidney illness in 1979 throughout her second being pregnant. She was on hemodialysis for a few years and in 2001, obtained 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 every little thing in gratitude to her nameless kidney donor.
Dr. Shahid Nazir Muhammad, Specialist Biomedical Scientist, The College of the West of England (UWE) and Educational Lead, on behalf of The Renal Affected person Assist Group (RPSG), United Kingdom: “Future analysis integrating perceptions to acknowledge CKD as a situation with numerous morbidities and investigations to discover academic wants is mission vital. The Renal Affected person Assist Group (RPSG) is a spot the place consciousness and analysis meet and encourages healthcare service and assist in understandable proportions. Innovation is sweet to an extent. Nevertheless, 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 usually are not forgotten and develop into unpeople (disenfranchised), and there’s kidney illness consciousness on a global degree.”
Ms. Vasundhara Raghavan, caregiver to a son with kidney illness and the AAKP International Ambassador within the United Arab Emirates: “An worldwide consortium of kidney affected person organizations will probably be a catalyst to drive many improvements and herald much-needed modifications within the kidney affected person ecosystem. The consortium can assist execute cross border remedies for paired kidney transplants potential by means of a global donor financial institution. Sharing of greatest practices, data, and sources will help the kidney affected person neighborhood immensely. A collaborative platform equivalent to this may assist us collect momentum in kidney analysis, affected person advocacy, and supply monetary help to needy sufferers. The wants of kidney sufferers are greatest expressed by them. They’re going by means of the arduous journey and having firsthand data of what works greatest for them. Sufferers driving these discussions will assist convey conclusive selections on coverage issues immediately impacting them. By way of this platform they’ll 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 vital and the worth addition that they’ll present to the dialog will probably be vastly sensible.”
AAKP and GW SMHS thank their 2021 International 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. Data on the 2022 International Summit is out there 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 shopper care alternative and therapy innovation. By 1973, AAKP sufferers had collaborated with the U.S. Congress and White Home to ascertain dialysis protection for any particular person struggling kidney failure, a U.S. taxpayer supported effort that has saved over a million lives. In 2018, AAKP established the biggest 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 through 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 International Summit on Kidney Illness Improvements is produced by AAKP’s nationwide strategic media accomplice, Briar Patch Media, which gives artistic consulting and full-service media video manufacturing and post-production for firms, non-profit organizations, people all through the U.S., and a number of other worldwide areas.
About the George Washington College College of Medication and Well being Sciences: Based in 1824, the George Washington College College of Medication 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 bettering the well being and well-being of our native, nationwide, and world communities. Go to their web site at smhs.gwu.edu.
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SOURCE American Affiliation of Kidney Sufferers
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