Foundation for Prader-Willi Blog

What's Happening In PWS Research? [2021 CONFERENCE VIDEO]

In this 67‑minute video, Dr. Theresa Strong and the FPWR Research Team share highlights of projects we are currently advancing. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.

January 25, 2022 Read More

Topics: Research

Newborn Screening Test for PWS Paves the Way for Earlier Diagnosis

Research at a Glance: A new test, funded in part by FPWR, has been designed to simultaneously screen newborns for three rare genetic disorders In a recent study, the test was found to be feasible, reliable, and scalable Screening for Prader Willi, An...

January 25, 2022 Read More

Topics: Research

Encouraging Update from Soleno Therapeutics Regarding DCCR

Soleno Therapeutics has provided an update following recent interactions with the U.S. Food and Drug Administration (FDA) regarding the development of once-daily DCCR (diazoxide choline) extended-release tablets for the treatment of Prader-Willi synd...

January 24, 2022 Read More

Topics: Research

Levo Therapeutics Receives Complete Response from FDA Regarding Carbetocin NDA

Levo Therapeutics, announced today that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) regarding its New Drug Application (NDA) for LV-101 (intranasal carbetocin) as a treatment for hyperphagia, anxi...

January 18, 2022 Read More

Topics: Research

Saniona Initiates Phase 2b Clinical Trial of Tesomet for PWS

Saniona, a clinical-stage biopharmaceutical company focused on rare diseases, has announced the initiation of a Phase 2b clinical trial of Tesomet in patients with Prader-Willi syndrome (PWS).

January 7, 2022 Read More

Topics: Research

Standards of Care for Children and Adults with PWS [2021 CONFERENCE VIDEO]

In this 1-hour video, Dr. Jessica Duis, Clinical Geneticist from Children's Hospital Colorado explains standards of care for children and adults with PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.

December 20, 2021 Read More

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 ...

December 20, 2021 Read More

Topics: Research

Standards of Care for Children Ages 0-2 With PWS [2021 CONFERENCE VIDEO]

In this 1-hour video, Dr. Jessica Duis, Clinical Geneticist from Children's Hospital Colorado explains standards of care for children ages 0-2 with PWS. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.

December 14, 2021 Read More

Topics: Research

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...

November 2, 2021 Read More

Topics: News, Research