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FPWR 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.

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...

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...

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...

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).

Topics: Research

Pushing Beyond Her Comfort Zone, PWS Mom Advocates for Child's Future

A special contribution by guest blogger Charlotte Kellar. Charlotte shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Let me count the ways … To doubt your own child is one of the worst feelings in...

Topics: Stories of Hope

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.

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

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.

Topics: Research

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