Nephrogenic Diabetes Insipidus Foundation - NDIF

Nephrogenic Diabetes Insipidus Foundation - NDIF Supporting education, research, treatment and cure for Nephrogenic Diabetes Insipidus.

A paid clinical trial for hereditary NDI / AVP-R is enrolling at two US locations: Florida and Texas. Up to $16,000, tra...
08/17/2026

A paid clinical trial for hereditary NDI / AVP-R is enrolling at two US locations: Florida and Texas. Up to $16,000, travel and hotel covered.

NDI-5001 is an investigational treatment for the condition; Phase 1 is recruiting now. $15,000 to $16,000 compensation. Flights, hotel, and ground transportation arranged and paid for. Private room and meals during the two-week clinic stay. A companion can travel with you.

Adult males 18 to 55 with hereditary NDI / AVP-R. A few minutes to register; no commitment.

https://screening.ndif.org

Phase 1 of a clinical trial testing an investigational treatment for people living with NDI (AVP-R). Learn more about the trial and add your name — the first step is a short interest form, not enrollment.

A San Antonio research site has been added to Phase 1 of the NDI-5001 trial, joining Jacksonville, Florida.Here's what p...
08/10/2026

A San Antonio research site has been added to Phase 1 of the NDI-5001 trial, joining Jacksonville, Florida.

Here's what participation actually looks like. Travel is arranged and covered for you, including a flight and a hotel the night before if you're coming from a distance. You'll have a private room and meals during your stay. A companion can travel with you. Participation is compensated.

If you're an adult male ages 18 to 55 living with hereditary NDI / AVP-R, the first step takes a few minutes and commits you to nothing:

Phase 1 of a clinical trial testing an investigational treatment for people living with NDI (AVP-R). Learn more about the trial and add your name — the first step is a short interest form, not enrollment.

Hello, NDI community,We're still actively enrolling for the Phase 1 clinical trial of NDI-5001. If you don't meet the re...
07/27/2026

Hello, NDI community,

We're still actively enrolling for the Phase 1 clinical trial of NDI-5001. If you don't meet the requirements for this phase, please add your name anyway — the criteria for future phases may differ, and we'll reach out if there's a match.

Phase 1 of a clinical trial testing an investigational treatment for people living with NDI (AVP-R). Learn more about the trial and add your name — the first step is a short interest form, not enrollment.

The NDI-5001 clinical trial is now enrolling — and our first research site is Jacksonville, Florida.If you're an adult (...
07/11/2026

The NDI-5001 clinical trial is now enrolling — and our first research site is Jacksonville, Florida.

If you're an adult (ages 18–55) living with hereditary nephrogenic diabetes insipidus (NDI/AVP-R), this is a chance to take part in research toward a potential new option.

Participation is compensated, and spots at each site are limited — so early interest matters.

The first step is simple and commits you to nothing. Just share a few details: https://screening.ndif.org

Not near Jacksonville? You can still sign up to be contacted as new sites open.

Phase 1 of a clinical trial testing an investigational treatment for people living with NDI (AVP-R). Learn more about the trial and add your name — the first step is a short interest form, not enrollment.

Clinical Trail Update: The NDI-5001 clinical trial is now enrolling and our first research site is Jacksonville, Florida...
07/10/2026

Clinical Trail Update:
The NDI-5001 clinical trial is now enrolling and our first research site is Jacksonville, Florida.

If you live with hereditary nephrogenic diabetes insipidus (NDI/AVP-R), this is a chance to take part in research toward a potential new option. Participation is compensated, and spots at each site are limited — so early interest matters.

The first step is simple. Just share a few details at https://screening.ndif.org

Not near Jacksonville? You can still sign up to be contacted as new sites open.

Review what this phase involves, then register your interest. A research-site coordinator will reach out about next steps.

Is your phone carrying your NDI / AVP-R emergency info? It should be.We've added step-by-step instructions to set up you...
06/30/2026

Is your phone carrying your NDI / AVP-R emergency info? It should be.

We've added step-by-step instructions to set up your phone's built-in Medical ID. It shows your critical info on the lock screen so responders see it without unlocking your phone — and we give you the wording to enter.

Doesn't replace your printed card — set up both. A phone can stop working; a card never does.

Medical alert cards for NDI patients available in your language.

In case you missed it: for the first time, a treatment designed specifically for X-linked congenital NDI/AVP-R has reach...
06/29/2026

In case you missed it: for the first time, a treatment designed specifically for X-linked congenital NDI/AVP-R has reached a registered human trial.

NDI-5001 — developed by NephroDI Therapeutics with Otsuka Pharmaceutical — works by helping kidney cells hold onto water, rather than just managing symptoms with fluids and a low-sodium diet. This spring, its first human trial was officially registered with the U.S. government. It's an early safety study, and this first phase is designed for adult males, but it's the step that makes broader trials, including ones for children, possible down the road.

We broke down what the trial involves, who it's designed for, and what it means for families in our latest post:

→ Read: A Possible Treatment for NDI Is Moving Closer to Reality
https://www.ndif.org/post/a-possible-treatment-for-ndi-is-moving-closer-to-reality

We're building a clearer picture of what NDI families actually need, from diagnosis through daily life. If you have a few minutes, your input directly shapes how we advocate and where research attention goes.

Share your experience: https://survey.ndif.org

Research is moving. Staying subscribed is the best way to hear about trial updates as they develop.

— The NDI Foundation

A possible treatment for X-linked congenital NDI is moving closer to human study. NDI-5001 is now part of a registered Phase 1b trial, giving families a meaningful sign of progress while research continues.

Help advance NDI research — and shape what comes next.We're gathering experiences from people living with NDI/AVP-R and ...
06/16/2026

Help advance NDI research — and shape what comes next.

We're gathering experiences from people living with NDI/AVP-R and their caregivers to better understand the condition and support ongoing research.

We're also identifying people who may want to be contacted about future research opportunities. It takes about 3 minutes, and your voice makes a difference.

https://ndif.org/ > Via our website
https://survey.ndif.org/ > Direct

Thank you very much for sharing your story.

Share your experience with Nephrogenic Diabetes Insipidus and help advance research toward new treatments. Your voice matters.

A new update on NDI-5001 points to real progress in treatment research for X-linked congenital NDI. It is not an approve...
05/27/2026

A new update on NDI-5001 points to real progress in treatment research for X-linked congenital NDI. It is not an approved cure, and it is still early, but the latest milestone matters.

We’ve posted a short breakdown of what changed, who this first step applies to, and why families may want to stay connected as the research moves forward.

Read the update and subscribe to NDIF for future research news.

A possible treatment for X-linked congenital NDI is moving closer to human study. NDI-5001 is now part of a registered Phase 1b trial, giving families a meaningful sign of progress while research continues.

NDI is also called AVP-R. Families should know both terms.You may see AVP-R in medical records, research updates, or con...
05/17/2026

NDI is also called AVP-R. Families should know both terms.

You may see AVP-R in medical records, research updates, or conversations with healthcare providers. It stands for Arginine Vasopressin Resistance, another name for Nephrogenic Diabetes Insipidus.

Read more on the NDIF website:

Understanding nephrogenic diabetes insipidus (NDI). Learn the key facts, symptoms, causes, and how it’s diagnosed.

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