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Foundation for Prader-Willi Blog | Research

FPWR Launches First of Kind PWS Genome Project

FPWR is pleased to announce the launch of an exciting new research study: the PWS Genome Project. This study will provide new insight into how variations across the entire genome influence the range and severity of symptoms in people with Prader-Will...

Topics: Research

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...

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&A ...

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...

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...

Topics: Research

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

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

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

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

Neuren Pharmaceuticals Adds Prader-Willi Syndrome to Development Pipeline

Neuren Pharmaceuticals has added Prader-Willi syndrome to their development pipeline for compound NNZ-2591 following a successful study in a pre-clinical model. The study showed compelling benefits for treating key symptoms of PWS. 

Topics: Research