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Home Dialyzors United

Our Day, Our Way

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HDU NEWS

2018 Top Ten plus

January 15, 2019 5:09 pm

The ABCs of HDU: ADVOCACY, BUILDING FOR THE FUTURE, and... Read more →

Home Dialyzors Welcomes Executive Director

January 9, 2019 10:32 am

For Immediate Release January 1, 2019 Contact: Nichole Jefferson, President... Read more →

In Memory of Tina Harrison

November 15, 2018 6:45 pm

Tina Harrison We mourn the loss of our past President,... Read more →

In Memory of Gary Lynn

September 20, 2018 5:26 pm

Gary Lynn January 23, 1947 – September 4, 2018 We... Read more →

Make Your Voice Heard!

August 28, 2018 12:48 pm

Medicare has invited suggestions on how they can increase access... Read more →

DONATION

Home Dialyzors United depends on your tax exempt donation to continue the education, support and advocacy of home dialysis. We can't do it without your help.
You can also donate to HDU in memory of a loved one.

About HDU

At Home Dialyzors United our mission is: "To inspire, inform, and advocate for an extraordinary quality of life for the home dialyzor community."

Since its founding in 2006, HDU has become recognized as an effective provider of support to home dialyzors, having a real impact within the community.

The next several years promise to be exciting ones for HDU as we evolve into an organization prominent in advocating for the well-being of the home dialysis community.

UPCOMING EVENTS

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It has been Nichole Jefferson‘s personal mission to tell her story and promote awareness. She was diagnosed with end-stage renal disease (ESRD) in October 2003. At that time, not only was she unaware of what that meant; she also did not know she was a high-risk factor for developing the disease.
After the initial shock of the diagnosis, she decided peritoneal dialysis (PD) was the best option and utilized PD for a few years until she needed to switch to hemodialysis.
She received a kidney transplant from a deceased donor on June 12, 2008, but at the time, she didn’t realize it was simply another form of treatment and not a cure. Today, Nichole is waiting for a new transplant.
Nichole has worked with many advocacy groups on Capitol Hill and has provided her personal experience with ESRD to leaders in the field of nephrology. She tries to express the feelings of those who are unable or unwilling to speak for themselves.

Amy Staples

Appointments:

  • Ambassador for AAKP
  • Ambassador for DPC
  • Certified Kidney Health Coach AKF
  • ESRD Network 8 Patient Advisory Committee and Learning Action Network
  • Kidney Transplant Learning Center with UNOS
  • NCC NPFE Subject Matter Expert
  • NKF Kidney Advisory Committee, former MENTOR with PEERS MENTOR
  • Patient Centered Outcomes Research Institute (PCORI)
  • Standardized Outcomes in Nephrology (SONG)
  • Chronic Disease Coalition
  • Alliance for Home Dialysis
  • Former PAC and LAN member for Heartland Kidney Network
  • Blogger at Kidney BEANS Count

Invite Amy Staples to Speak to your organization
zionsgate1@yahoo.com

Nieltje Gedney

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

  • 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)
  • AAKP Ambassador
  • 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
  • Medical Education Institute, contributor Kidney Views Blog, Newsletter editor, author of Dialyze to Live
  • SONG-HD Fatigue Consensus Workshop, Investigator
  • Flavis, product video endorsement
  • NxStage, product video endorsement
  • Dialysis Patient-Centeredness and Precision Medicine: Focus on Incremental Home
    Hemodialysis and Preserving Residual Kidney Function, co-author with Kamyar Kalantar-Zadeh, MD, MPH, PhD
  • Flying solo: Hemodialysis at home by yourself is safe and now legal, Nephrology News and Issues

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

  • 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 presenation)
  • 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

Invite Nieltje Gedney to Speak to your organization
ngedney@homedialyzorsunited.org

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  • Inspire
    • Dialyzor Stories
    • Dialyzor Blogs
    • HDU Leadership
  • Inform
    • About the HDU Boards
      • HDU Board of Directors
      • Executive Director of HDU
      • HDU Advisory Board
    • Press Releases
    • Dialysis in the News
    • Resources
      • Resources
      • Care Partner Resources
      • Emergency Preparedness Links
    • Guest Posts
    • Dialysis Research
    • In Memoriam
  • Advocate
    • Our Advocacy
  • TRAVEL
    • The Dialyzor Experience
    • Travel Primer
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      • Clinics
      • Shipping
      • Travel Insurance
    • Nxpeditions®
    • Consumer Complaints
      • File a Consumer Complaint
  • WHAT WE DO
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    • Calendar
    • Past Events