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FPWR Blog

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FAQ: DCCR, Drug Development, and Advocacy

Since Soleno's announcement that the FDA will require an additional clinical trial before accepting a New Drug Application for DCCR, FPWR has received a number of questions regarding DCCR, where DCCR is in the approval process, what advocacy looks li...
April 30, 2021 Read More

Topics: Research

Keeping Your Loved One With PWS Safe On The Internet

Let's be frank: our loved ones, like all of us, are spending more and more time online. Some PWS features—such as obsessional thinking, compulsive behavior, and poor impulse control—make keeping an eye on your loved one with PWS while online even mor...
April 16, 2021 Read More

Topics: Research

An Update Letter From Soleno Therapeutics

Dear members of the PWS community, We at Soleno Therapeutics would like to provide an update on the status of DCCR. As we have worked with the PWS community over the last several years, whether it is with advocacy leaders from PWSA USA and FPWR, or w...
April 14, 2021 Read More

Drug Development, the FDA and the Role of the PWS Community [WEBINAR]

Where are we with respect to new treatments for PWS? What are our next steps and how can the patient community help ensure that treatments for PWS are made available as soon as possible? In this webinar, our panelists discuss:
April 12, 2021 Read More

FPWR and PWSA|USA Request FDA Apply Regulatory Flexibility

FPWR and PWSA|USA have submitted a petition letter to the FDA requesting them to apply regulatory flexibility and to review a New Drug Application for DCCR (diazoxide choline extended-release).
April 8, 2021 Read More

Topics: News

Acceptance and Commitment Training for PWS Parents [2020 CONFERENCE VIDEO]

In this 90‑minute workshop, Drs. Janice Forster and Stuart Libman provide Acceptance and Commitment Training (ACT) to help PWS parents build skills for living with greater awareness, openness, and engagement in valued life pursuits. The session inclu...
April 1, 2021 Read More

Topics: Research

Take Action for PWS Research: 4 FUN and EASY Ideas To Help You Get Started

There has never been a more critical time to keep research pushing forward. We need your help to raise the funds needed to advance PWS research. Whether you have never asked for donations or you are a veteran fundraiser, here are 4 fun and creative i...
March 30, 2021 Read More

PWS Registry Data: Thyroid Issues in PWS [INFOGRAPHIC]

When it comes to hormone imbalances in Prader-Willi syndrome (PWS), growth hormone deficiency and growth hormone therapy are at the forefront of the conversation. However, the levels of several other hormones are also more frequently different in PWS...
March 22, 2021 Read More

Topics: Research

SUMMIT SHEDS LIGHT ON IMPACT OF SLEEP DISRUPTION IN RARE DISEASES

Harmony Biosciences has published a white paper sharing outcomes from a Summit on Sleep Disruption the company hosted in December 2020. For the first time, this summit convened a diverse group of people living with rare diseases, caregivers and leade...
March 19, 2021 Read More

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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