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Foundation for Prader-Willi Blog | News (3)

FPWR Welcomes Natalie Brenneman to the Team!

Natalie is a veteran to our community of dedicated movers and shakers and has been involved with our Foundation since the birth of her son in 2015. We are excited to bring her onboard so she can put her talents and experience to use supporting other ...

Topics: News

FPWR, FAST, ASF, and Dup15q Unite to Fund Newborn Screening Grant

The Foundation for Prader-Willi Research (FPWR), Foundation for Angelman Syndrome Therapeutics (FAST), Angelman Syndrome Foundation (ASF), and Dup15q Alliance announce a collaborative initiative to fund the addition of chromosome 15 conditions to Ear...

Topics: News, Research

Carbetocin Approval: Your Comment Could Make the Difference

Would you like to be part of our community-wide effort to advocate for new treatments for PWS? The FDA is now accepting comments from the public regarding a new drug application currently under review for LV-101 (intranasal carbetocin), a potential t...

Topics: News, Research

FPWR and PWSA | USA Engage FDA in Patient Listening Session

On June 17, 2021, FPWR and PWSA | USA engaged the FDA in a Patient-Led Listening Session to share our community’s experiences related to Prader-Willi syndrome (PWS). The purpose of this meeting was to promote dialogue between the FDA and members of t...

Topics: News

Radius Health Announces Pivotal Study for Prader-Willi Syndrome

Radius Health announced today their plans for a Pivotal Study for RAD011 for the treatment of hyperphagia in Prader-Willi syndrome. The Phase 2/3 study, SCOUT (Synthetic Cannabidiol Oral Solution), will evaluate safety and tolerability in PWS and is ...

Topics: News

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.

Topics: News

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...

Topics: News

FPWR and PWSA | USA Announce Upcoming Meeting with FDA

With your support, FPWR and PWSA | USA have been granted a meeting with the FDA, which will take place via teleconference later this month. This small, non-public meeting will allow FPWR and PWSA | USA to connect first-hand with the FDA staff and sha...

Topics: News

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).

Topics: News