Foundation for Prader-Willi Blog (29)

What Does Effective PWS Treatment Advocacy Look Like?

Last fall, the PWS community was excited to see two drugs complete Phase III clinical trials: both DCCR and Carbetocin hold promise in addressing hyperphagia, a top priority for PWS families. Both studies had positive results, but neither reached sta...

May 7, 2021 Read More

Topics: Research

Orthopedic Challenges in Prader‑Willi Syndrome [2020 CONFERENCE VIDEO]

In this 60‑minute workshop, Dr. Van Bosse discusses the diagnosis and treatment of orthopedic challenges in PWS and how in his practice of pediatric orthopedic surgery since 1994, he has helped hundreds of patients with PWS. The session includes Q&am...

May 3, 2021 Read More

Topics: Research

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

FPWR Blog

Categories

What Does Effective PWS Treatment Advocacy Look Like?

Orthopedic Challenges in Prader‑Willi Syndrome [2020 CONFERENCE VIDEO]

FAQ: DCCR, Drug Development, and Advocacy

Keeping Your Loved One With PWS Safe On The Internet

An Update Letter From Soleno Therapeutics

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

FPWR and PWSA|USA Request FDA Apply Regulatory Flexibility

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

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

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