Global Kidney Innovation Summit Accelerates International Consortium

Patient Needs and Insights Drive New Era of Global Kidney Research,Discovery,and Personalized Treatments

WASHINGTON,Sept. 18,2021 -- TheAmerican Association ofKidneyPatients(AAKP),thelargest independent kidneypatient organization intheUSA,andits strategic partners attheGeorge Washington University (GW) School of Medicine and Health Sciences (SMHS) continue to make a unique impact in the international battle against kidney diseases.Their 2021 annualGlobal Summit on Kidney Disease Innovations focused on expanding patient consumer choices and improved health outcomes,engaged a combined audience of over 20,000 viewers across 80 countries,exceeded their 2020 virtual attendance record established at the height of the COVID-19 pandemic,and continues to draw viewers worldwide to their online content.TheGlobal Summitisakey component ofAAKP'sTheDecade oftheKidney™,anAAKPglobal initiative (read article) launched in 2019 forthe2020-2030 decade to help U.S.and international policymakers better addressthedevastatinghumanandsocietal costs ofkidneydiseases based onpatient-defined priorities.

TheGlobal Summithas accelerated engagement in an expanding international consortium of influencers,led by patientconsumers and advocates,committed to a new era in kidney medicine marked by more inclusive clinical trials,greater use of patient insight data,personalized medicine,and disruptive technologies including artificial implantable and wearable kidneys. The patient-led consortium includesacademicandmedical researchers,clinical trial designers,innovators,capital market investors,companies,non-governmentalandfaith-based organizations,as well as elected and appointedgovernment leaders across the globe.Kidney patients worldwide are demanding an end to outdated dialysis care,characterized by staggeringly high mortality rates,and greater access to new products and solutions aimed at detecting,preventing,and treating kidney diseases earlierandin waysthatimprove quality of life and decrease dependency and disease-related unemployment. They are also organizing and coordinating their policy and grassroots efforts in a sophisticated effort to advancemore common sense regulatoryandpayment reforms that prioritize patient needs and fully support the timely entry of new,safe products into globalconsumer markets.Based on the ongoing success and rapidly expanding interest inTheGlobal Summit,AAKP and GWU have already opened pre-registration for the May 2022Global Summit on Kidney Disease Innovations.All 2021 Global Summit virtual presentations are available OnDemand through theAAKP websiteandAAKPYouTube channel.

Dr. Dominic Raj,Co-Chair ofTheGlobal Summit,a Professor of Medicine,Biochemistry and Genetics and Biostatistics and Epidemiology,and Director of theDivision ofKidneyDiseases and Hypertension at theGeorge Washington University School of MedicineandHealth Sciences,stated,"Asaresearcher in molecular biologyandgenetics,I seek to personalize medicine by genesandmolecular pathways,but I think itismore important to personalize by patient needs. This,I believe,isthekey take home message fromTheGlobal SummitandI am very proud of my colleagues acrosstheglobe who are actively incorporatingtheunique insights ofkidney patientsin their researchanddiscovery of new therapies to preventandtreatthegrowing spread ofkidneydiseases."

Hilde Vautmans,Member oftheEuropean Parliament (MEP),Chair of MEPKidneyHealth,and Deputy Coordinator for the Committee on Foreign Affairs foraRenew Europe (EU)provided avirtual presentationin which she praised kidney patients worldwide for their efforts to work alongside government leaders in the fight against kidney diseases. Further,Vautmans invited greater cooperation among elected leaders in the European Parliament and the U.S. Congress,especially among like-minded members of the U.S. Congressional Kidney Caucus,stating,"This battle is difficult. And I can speak from experience here,but […] change is possible […] but we can and have to act more. In Europe but also in the United States. I always say we needmore awareness,more funding and more innovation. Today I want to add a fourth element and that is collaboration,because as we all are aware and all are witnessing,diseases know no borders. So,let's work together […]We share a common goal,on both sides of the Atlantic: We must further improve the lives of people with Kidney Disease!"

The 2021Global Summitincluded over 15 panels featuring over 40 patientandmedical experts along with amenu 29 expert videos covering COVID-19 kidney-related issues,diversity in clinical trials,APOL-1 genetic research,diabetic kidney disease (DKD),nutrition,andtelemedicine. Executivesfrom top companies inthekidneyspace underscoredtheimportanceandvalue of patient insights in science,discovery,andthedevelopment of new drugs,devices,anddiagnostics. Emphasizing the key role patients play in the new era of kidney medicine were leaders fromBayer Pharmaceuticals,Baxter International Inc.,bioMérieux,CareDx,Inc.,CSL Behringer,Novartis,andSangamo Therapeutics,Inc. They were joined by key policy and innovation leaders includingBarbara L. Bass,MD,VicePresidentfor Health Affairs,Dean oftheGW School ofMedicineandHealth Sciences,andCEO oftheGW Medical Faculty Associates (USA);Vivekanand Jha,MBBS,DM,PHD,FRCP,FAMS; Executive Director,The George Institute for Global Health (AU) and President,International Society of Nephrology (IND);Fokko Wieringa,PhD,Principal Scientist,IMEC of TheNetherlands and the DutchKidneyFoundation (EU) and a member of The Kidney Health Initiative (USA);Murray Sheldon,Associate Director for TechnologyandInnovations,Center for DevicesandRadiological Health,U.S. FoodandDrug Administration (USA);Jack Kalavritinos,FounderandPrincipal,JK Consulting and member of the APCO Worldwide International AdvisoryCouncilandHealth Advisory Board (USA).

Richard Knight,President of the American Association of Kidney Patients,a former hemodialysis patient and 14-year kidney transplant recipient,stated,"Kidney disease is a devastating disease that is rapidly expanding and negatively impacting patients,families,and economies throughout the world. Future innovations in kidney medicine depend upon greater patient engagement through fully inclusive clinical trials and research,and the GW School of Medicine and Health Sciences is an established global leader in this field. I thank Dean Dr. Barbara Bass,Dr. Dominic Raj,and our new European Union ally Hilde Vautmans for their deep respect for patients and their concerted efforts to unite patients,clinicians,and policy-makers in the fight against all kidney diseases." Knight (read CJASN article) is a former U.S. Congressional staff member and business consultant who serves on the National Institutes of Health (NIH),National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Advisory Council,and as the Co-Chair of the Community Engagement Committee for the Kidney Precision Medicine Project (KPMP).

Paul T. Conway,Co-Chair ofTheGlobal SummitandAAKPChair of PolicyandGlobal Affairs,a former peritoneal dialysis patient and 24-year kidney transplant recipient,"AAKP and our friend and ally Dr. Dominic Raj envisioned The Global Summit on Kidney Innovations as a unique international event aimed at accelerating cooperation among patients,researchers,and policy professionals. Kidney patient consumers worldwide demand and deserve far greater care choice and are well aware of the value they bring as partners to pioneers developing the next generation of diagnostics,and biologics. AAKP has expanded our collaborations with patient groups worldwide to advance innovation and to support all who share our sense of urgency and intent to transcend legislative,regulatory,and payment barriers that limit care choice and delay entry of new,safe treatments into the global consumer markets." Conway (read CJASN article) is a former Chief of Staff of the U.S. Department of Labor and serves on the External Expert Panel of National Institutes of Health (NIH),National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK),Kidney Precision Medicine Project (KPMP),the American Board of Internal Medicine's Nephrology Specialty Board,and is a Patient Voice Editor for The Clinical Journal of the American Society of Nephrology.

AAKP has formal partnerships withthe multiple international kidney patient organizations including in support of The Global Summit,The Decade of the Kidney™,and the growing international kidney innovation consortium,including:Argentina-based Asociacion Solidaria de Insuficientes Renales (ASIR);European Kidney Patients' Federation (EKPF) and the European Kidney Health Alliance (EKHA); andUnited Kingdom-based Renal Patient Support Group. AAKP will be announcing multiple additional global partnerships throughout the remainder of 2021 and 2022.AAKP leaders and their global allies have carried the key messages ofThe Global Summitinto other globalforums,including the University of Washington's Center for Dialysis Innovation's recent IDEAS Summit,where Dr. Murray Sheldon of the U.S. Food and Drug Administration conducted a presentation on the expanding international kidney innovation consortium. Future presentations on the key learnings and messages ofThe Global Summitand the international kidneyinnovation consortium will be conducted at the AAKP Annual National Patient MeetingSeptember 24-25,2021,and at theAmerican Society of Nephrology's,2021Kidney Week,November 4-7,the largest kidney professional conference in the world.Voices in support of AAKP's expanding global partnerships and international collaborations include:

Mr. Colm Clifford,kidney patient and AAKP Global Ambassador in the Republic of Ireland:"Change happens when a collective voice sends a strong message that change is required. This begins from the grassroots. While it may eventually be signed off with the stroke of a pen,it's the strong collective voice that can't be ignored that drives that to happen. In kidney disease,after TheGlobalSummit,I'm confident we really are moving forward and it's an exciting time to be involved."

Daniel Gallego,President of the European Kidney Patients' Federation (EKPF):"We are more than happy that the AAKP reached out to us to enforce the collaboration of kidney patients worldwide to really give a push for innovation and new therapies that will enhance quality of life of kidney patients,contributing to expand our daily life activities. EKPF strongly believes that in creating these therapies,patients should be included and in the driver's seat to reach next level therapies. Together we can create and extend a platform that is responsible for the long-overdue innovation that kidney patients are waiting for."

Raymond Vanholder,President of the European Kidney Health Alliance (EKHA):"Collaboration for improvement of kidney therapies can really benefit by moving boundaries. We are delighted with the expansion of our international collaboration by teaming up with AAKP. At EKHA we strongly believe in the empowerment of patients to enhance quality of life where possible. We therefore adopted their 'Decade of the Kidney' program to create awareness for the unmet needs of kidney patients. An important part of this collaboration will exist in setting the political agenda at the level of the EU and USA to push for real innovative therapies and corresponding funding to realize them."

Dr. Maria Eugenia Vivado Duran,PresidentoftheArgentina-basedAsociación Solidaria de Insuficientes Renales of Buenos Aires; AAKP Global Ambassador:"ASIR joins together with AAKP in support of the rights of the kidney patients and to share in efforts to further medical innovations that will better prevent and treat kidney diseases and improve the quality of life for kidney patients." Dr. Vivado Duran,a pediatrician and AAKP Global Ambassador,was diagnosed with kidney disease in 1979 during her second pregnancy. She was on hemodialysis for many years and in 2001,received a kidney transplant from a deceased donor,allowing her to continue working for patients,educating the community,and enjoying her family. She has been president of ASIR for four consecutive terms and does everything in gratitude to her anonymous kidney donor.

Dr. Shahid Nazir Muhammad,Specialist Biomedical Scientist,TheUniversity oftheWest of England (UWE) andAcademic Lead,on behalf ofTheRenal Patient Support Group (RPSG),United Kingdom:"Future research integrating perceptions to acknowledge CKD as a condition with diverse morbidities and investigations to explore educational needs is mission critical. The Renal Patient Support Group (RPSG) is a place where awareness and research meet and encourages healthcare service and support in comprehensible proportions. Innovation is good to an extent. However,timely and targeted education relating CKD and recommendations with a solid focus is where best practice between pediatric and adult nephrology,tackling health inequalities is pinnacle to ensure that CKD patients are not forgotten and become unpeople (disenfranchised),and there is kidney disease awareness on an international level."

Ms. Vasundhara Raghavan,caregiver to a son with kidneydisease and the AAKP Global Ambassador in the United Arab Emirates:"Aninternational consortium ofkidneypatient organizations will beacatalyst todrive manyinnovationsandbring in much-needed changes in thekidneypatientecosystem.Theconsortium can help executecross border treatments for paired kidneytransplants possible through an internationaldonor bank. Sharing of best practices,knowledge,andresources will aidthekidneypatient community immensely.Acollaborative platform such as this will help us gather momentum inkidneyresearch,patient advocacy,and provide financial aid to needy patients.Theneeds ofkidneypatientsare best expressed by them. They are going through the arduous journeyandhaving firsthand knowledge of what works best for them.Patientsdriving these discussions will help bring conclusive decisionson policymatters directlyimpactingthem. Through this platform they will haveachannel to voicetheir opinionsand get to share their experiences toawider community. Gettingpatientsinvolved early on in these discussionsis extremely critical and the valueadditionthatthey will provide totheconversation will be vastly practical."

AAKPandGW SMHS thank their 2021 Global Summit sponsors. Gold Level: Horizon TherapeuticsandTravere Therapeutics; Silver Level: CareDx,Inc.; Patron Level: Hansa BiopharmaandSanofi Genzyme;andSupporting Level: AstraZeneca and Eurofins Transplant Genomics.Information onthe2022 Global Summit is available athttps://aakp.org/programs-and-events/global-summit/.

AbouttheAmericanAssociation ofKidneyPatients(AAKP):Since 1969,AAKP has been a patient-led organization driving policy discussions on kidney patient consumer care choice and treatment innovation. By 1973,AAKP patients had collaborated with the U.S. Congress and White House to establish dialysis coverage for any person suffering kidney failure,a U.S. taxpayer supported effort that has saved over one million lives. In 2018,AAKP established the largest U.S. kidney voter registration program,KidneyVoters™. Over the past decade,AAKP patients have helped gain lifetime transplant drug coverage for kidney transplant recipients (2020); new patient-centered policies via the White House Executive Order on Advancing American Kidney Health (2019); new job protections for living organ donors from 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. The Global Summit on Kidney Disease Innovations is produced by AAKP's national strategic media partner,Briar Patch Media,which provides creative consulting and full-service media video production and post-production for corporations,non-profit organizations,individuals throughout the U.S.,and several international locations.

AbouttheGeorge Washington University School of MedicineandHealth Sciences:Founded in 1824,theGeorge Washington University School of MedicineandHealth Sciences (SMHS) wasthefirst medical school inthe nation's capitalandisthe11th oldest inthecountry. Working together in our nation's capital,with integrityandresolve,theGW SMHSiscommitted to improvingthehealthandwell-being of our local,national,andglobal communities. Visit their website atsmhs.gwu.edu.

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