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FPWR Blog

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...

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...

PWS Clinical Trials Alert

  FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely.  Some trials are testing new drugs while others are intervention ...

Topics: Research

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:

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).

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...

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...

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...

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...

Social Skills and Cognition Challenges in PWS  [2020 CONFERENCE VIDEO]

In this 75-minute video experts Elizabeth Roof, Anastasia Dimitropoulos, Louise Gallagher, and Lauren Schwartz-Roth discuss what we have learned about social skills and social cognition challenges in PWS and what we can do to address the them so that...

Topics: Research