FPWR Blog

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What Does Effective PWS Treatment Advocacy Look Like?
Last fall, the PWS community was excited to see two drugs complete Phase III clinical trials: both... Read more >
Source: FPWR Blog | Published: May 5 2021 - 12:00 PM
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Keeping Your Loved One With PWS Safe On The Internet
Let's be frank: our loved ones, like all of us, are spending more and more time online. Some PWS... Read more >
Source: FPWR Blog | Published: April 4 2021 - 08:00 AM
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An Update Letter From Soleno Therapeutics
Dear members of the PWS community, We at Soleno Therapeutics would like to provide an update on the... Read more >
Source: FPWR Blog | Published: April 4 2021 - 04:26 PM
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PWS Clinical Trials Alert
  FPWR maintains the latest clinical trial information so that you can stay abreast of trial... Read more >
Source: FPWR Blog | Published: April 4 2021 - 07:00 AM
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Drug Development, the FDA and the Role of the PWS Community [WEBINAR]
Where are we with respect to new treatments for PWS? What are our next steps and how can the... Read more >
Source: FPWR Blog | Published: April 4 2021 - 07:37 AM
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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... Read more >
Source: FPWR Blog | Published: April 4 2021 - 06:45 AM
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Acceptance and Commitment Training for PWS Parents [2020 CONFERENCE VIDEO]
In this 90‑minute workshop, Drs. Janice Forster and Stuart Libman provide Acceptance and Commitment... Read more >
Source: FPWR Blog | Published: April 4 2021 - 08:00 AM
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Take Action for PWS Research: 4 FUN and EASY Ideas To Help You Get Started
There has never been a more critical time to keep research pushing forward. We need your help to... Read more >
Source: FPWR Blog | Published: March 3 2021 - 10:20 AM
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PWS Registry Data: Thyroid Issues in PWS [INFOGRAPHIC]
When it comes to hormone imbalances in Prader-Willi syndrome (PWS), growth hormone deficiency and... Read more >
Source: FPWR Blog | Published: March 3 2021 - 08:21 AM
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SUMMIT SHEDS LIGHT ON IMPACT OF SLEEP DISRUPTION IN RARE DISEASES
Harmony Biosciences has published a white paper sharing outcomes from a Summit on Sleep Disruption... Read more >
Source: FPWR Blog | Published: March 3 2021 - 08:34 AM
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Social Skills and Cognition Challenges in PWS  [2020 CONFERENCE VIDEO]
In this 75-minute video experts Elizabeth Roof, Anastasia Dimitropoulos, Louise Gallagher, and... Read more >
Source: FPWR Blog | Published: March 3 2021 - 09:00 AM
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Neuren Pharmaceuticals Adds Prader-Willi Syndrome to Development Pipeline
Neuren Pharmaceuticals has added Prader-Willi syndrome to their development pipeline for compound... Read more >
Source: FPWR Blog | Published: March 3 2021 - 10:25 AM
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Hoops to End Hunger - How One Family Turned March Madness into PWS Awareness
Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports.... Read more >
Source: FPWR Blog | Published: March 3 2021 - 06:36 AM
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Sign-on to Our Letter to Make Sure YOUR Voice Is Heard By the FDA
In a disappointing decision, the FDA has stated that they will not review DCCR for the treatment of... Read more >
Source: FPWR Blog | Published: March 3 2021 - 12:34 PM
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