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Foundation for Prader-Willi Blog | 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

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, 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

How to Identify Mental Health Challenges in Your Loved One with PWS

October is Mental Health Screening Month, and we're encouraging our PWS community to learn more about how to identify mental health challenges early.

Topics: 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

Hyponatremia In PWS Is Rare But Fluid Intake Should Still Be Monitored

Hyponatremia is a condition where the sodium (salt) levels in the body are too low. If sodium levels get low enough, the person may become confused, experience a seizure, or even slip into a coma and (rarely) die. A few cases of hyponatremia due to e...

Topics: Research

PATH for PWS Data Supports Positive Findings From DCCR Trial

Data from the PATH for PWS study, an ongoing natural history study of individuals with PWS sponsored by the Foundation for Prader-Willi Research, supports the benefits observed in the open-label study (C602) of DCCR.  Analysis of trial data has shown...

Topics: Research

FDA Advisory Committee to Review Carbetocin (LV101) as PWS Treatment

Levo Therapeutic’s New Drug Application (NDA) for carbetocin as a treatment for PWS has been scheduled for a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held on November 4th, 2021. The Food and Drug Administration (FDA) c...

Topics: Research