On Rare Disease Day, families affected by Schaaf-Yang Syndrome are celebrated, highlighting their resilience and the importance of community advocacy. The Foundation for Prader-Willi Research encourages awareness and sharing of personal stories to inspire hope and recognition for those with rare diseases.
Raising awareness and celebrating the lives of children with Schaaf-Yang Syndrome on Rare Disease Day. Celebrate Rare with us with our Rare Disease Day Toolkit. Discover simple ways to: ✅ Raise awareness ✅ Share your story ✅ Make an impact · Together, we inspire hope, amplify voices, and work toward a future where every individual—regardless of diagnosis—is recognized for the extraordinary qualities that make them uniquely beautiful. ... Nicci has been dedicated to community-building and advocacy work for years, even before the birth of her son, Will, in 2020. With February 28 marking Rare Disease Day, we honor the courage, joy, and resilience of families living with Schaaf-Yang Syndrome (SYS). The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3). Foundation for Prader-Willi Research Phone: 888-322-5487 Email: [email protected]
Original title: “Celebrating Rare Disease Day: Spotlight on Two Inspiring Families”