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FPWR Blog

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New PWS Research Compares Mini-Brains In A Dish

Dr. Gua-Li Ming from the University of Pennsylvania has developed a new cellular model of PWS: a 3D organoid that mimics the arcuate nucleus found in the hypothalamus. This organoid, derived from stem cells with PWS, was compared to a typically devel...
July 6, 2021 Read More

Topics: Research

FDA Encourages Submission of Additional Data for DCCR

Soleno Therapeutics has announced that the FDA will accept additional data from their DESTINY PWS and C602 extension study to determine if the data generated are sufficient to support a potential New Drug Application (NDA) for diazoxide choline contr...
July 6, 2021 Read More

FDA Grants Priority Review for Levo Therapeutics’ New Drug Application for LV-101 for the Treatment of Prader-Willi Syndrome

Levo Therapeutics has announced the FDA has granted Priority Review for its New Drug Application (NDA) for LV-101 (intranasal carbetocin) as a treatment for hyperphagia and behavioral distress associated with PWS. A 6-month Priority Review will accel...
July 6, 2021 Read More

Study Confirms Growth Hormone for PWS Does Not Worsen Scoliosis

A new long-term study on scoliosis and growth hormone has been published. The publication, Effects of 8 Years of Growth Hormone Treatment On Scoliosis In Children With Prader-Willi Syndrome shows that 8 years of growth hormone treatment has no advers...
July 1, 2021 Read More

Topics: Research

Our First 2021 Venture Philanthropy Investment: Aardvark Therapeutics

In support of our mission to advance the development of new treatments for Prader-Willi syndrome (PWS), FPWR announces our newest venture philanthropy investment in Aardvark Therapeutics.
June 22, 2021 Read More

Topics: News

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomac...
June 18, 2021 Read More

Topics: Research

Pitolisant for Excessive Daytime Sleepiness in PWS [2020 CONFERENCE VIDEO]

In this 30‑minute video, Albena Patroneva from Harmony Biosciences explains what pitolisant is and how it works, and describes Harmony's Phase 2 clinical trial of pitolisant in patients with PWS. The session includes Q&A from participants in the ...
June 15, 2021 Read More

Topics: Research

Next Steps In PWS Advocacy

For more than a decade, FPWR has partnered with families and other PWS groups (PWSA|USA, IPWSO) to advocate for PWS treatments. We've worked diligently to build resources that address the FDA’s call for patient experience data, demonstrating high dis...
June 11, 2021 Read More

Topics: Research

FPWR and PWSA|USA Request Regulatory Flexibility & Review of NDA for Intranasal Carbetocin

In a continuation of our joint advocacy efforts supporting the full review of potential drugs for PWS, FPWR and PWSA | USA have submitted a petition letter to the FDA requesting that they apply regulatory flexibility and to review a New Drug Applicat...
June 10, 2021 Read More

Topics: News

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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