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Nieltje Gedney

Executive Director

Nieltje Gedney spent 20 years avoiding dialysis, and then found herself crashing into the ER and placed on emergency hemodialysis. After starting home hemodialysis in 2014, she felt great!

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Nieltje is no newcomer to advocacy work, just to dialysis, and is really enjoying her role as HDU’s Executive Director and past Vice President and Treasurer and working on the Policy and Advocacy Committee.

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Over the years, Nieltje has extended her advocacy to the following groups/areas:

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  • Kidney-COVID-19 Workgroup Memos & Priority Recommendations for HHS Leadership, April 13th, 2020

  • 2020 Winner of Patient Innovator Award for KidneyX submission: Development of a Real-Time Home Hemodialysis Toolkit https://www.kidneyx.org/PrizeCompetitions/PrizeWinners

  • 2020 Annual Dialysis Conference panelist: “What Can Professional Organizations Do to Promote Home Dialysis?”

  • 2019 NATIONAL SYMPOSIUM ON ANEMIA RENAL RESEARCH - THE PATIENTS VOICE, July 14, 2019 PCORI funded grant

  • Nature Reviews Nephrology, DOI: 10.1038/s41581-020-0292-7, Lead Author, Title: Innovations in dialysis: the user’s perspective

  • ESRD Network 5, Subject Matter Expert And Patient Advisory Committee (Home Dialysis, Vocational Rehabilitation), ESRD Medical Review Board

  • ESRD NCC Patient Outreach Workgroup – NEPOP materials

  • National Coordinating Council, National Patient and Family Engagement (NPFE) Learning and Action Network (LAN)

  • Alliance for Home Dialysis Access and Innovation Working Group

  • National Kidney Foundation, Sophisticated Centers Work Group, KDOQI Barriers to Home Dialysis Conference 

  • Kidney Health Initiative (KHI) Program Committee for the Seventh Annual KHI Stakeholders Meeting, Member

  • The Kidney Project (UCSF and Vanderbilt), Advisory Board Member

  • Medical Technology and Practice Patterns Institute, Inc., Committee Member, ESRD Anemia Research Priorities: Perspectives from Dialysis Patients and Stakeholders Dialysis CONFERENCE 2019 (PCORI Grant)

  • Building Research Capacity in the Dialysis Community at the Local Level, UNC PCORI Grant

  • Dialysis Patient Perspectives on CKD Advocacy: A Semistructured Interview Study, Participant, RRI/Fresenius Grant, Interview Participant

  • Flavis, product video endorsement

  • NxStage, product video endorsement

  • SONG-HD Fatigue Consensus Workshop, Investigator

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A partial list of Nieltje's publications:

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In addition, Nieltje has spoken to medical professionals and patients on the following topics:

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  • Dialysis 101, As Taught By the Patient (ANNA, Fresenius)

  • Home Hemodialysis: The Patient and Care Partner Perspective (ADC, CMS)

  • Let’s All Talk: Advanced Care Planning (with Denise Eilers at ADC)

  • Making Dialysis Easy (EasyDial)

  • What To Do When Dialysis is No Longer Safe At Home (ADC, panel presentation)

  • Life on Dialysis: Synergizing the Rights of Patients and Providers (ADC)

  • Travel on Dialysis: Myth vs. Reality (NxStage, DOT)

  • Dialysis: Beat the Odds (HDU Conference, Las Vegas)

  • Living the Good Life: Isn’t Easy (CMS Quality Conference)

  • Anemia and Me! (webinar with ESRD networks)

  • The Patient Perspective Panel (IDEAs, Center for Dialysis Innovation, University of Washington)

  • Patient Experience in Home Dialysis and the Benefits of Telemedicine, Alliance for Home Dialysis and Kidney Caucus, House Subcommittee hearing

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Invite Nieltje Gedney to Speak to your organization

ngedney@homedialyzorsunited.org

We Need Your Support Today!

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