PWSA Blog

Convention Spotlight: Julie Casey

We are excited to come together again in-person for the 37th PWSA | USA National Convention, June 21-24, 2023 in Orlando, FL! Leading up to this much-anticipated event, members of our PWS community are sharing their Convention memories and why it’s beneficial for others to attend! Below, PWS parent Julie Casey gives details about her...

Sharing Our Rare: Sheri & Lyra

Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...

Sleep Disturbances in Prader-Willi Syndrome

Contributed by Lynn Garrick, RN Sleep health is essential for everyone. It is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep...

Sharing Our Rare: Sue Colon

Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how...

Creating Your Child’s Education File

Have you ever walked away from an Individualized Education Program (IEP) meeting and thought to yourself, “That’s not what they told me during the last meeting” or, “Why are we having the same discussions each meeting? This is a waste of time.” Having an organized file that encompasses all documents regarding your child’s education will...

Your Voice Matters: Attend the FDA’s Externally-Led Patient-Focused Drug Development Meeting at PWSA | USA’s 37th National Convention

In an effort to bring together the PWS patient voice, PWSA | USA, IPWSO and FPWR are excited to host the first FDA Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for the Prader-Willi syndrome community. You won't want to miss this impactful event at PWSA | USA's 37th National Convention, June 21-24, 2023, in Orlando,...

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