Mason is 6 years old and living with Angelman syndrome
Supporting Rare Disease Day 2022.
Tackling rare diseases takes heart and a strong will. Inspired by the strength and ingenuity of patients, families, physicians, and researchers persevering in the face of incredible adversity, Ultragenyx is dedicated to going beyond what was previously possible for those living with rare and ultra-rare diseases. Today. Tomorrow. Every Day.
On this Rare Disease Day, let’s recognize and support organizations dedicated to improving the lives of families in the rare disease community.
Going Beyond for Newborn Screenings.
Genetic Alliance’s Baby’s First Test Program and the Rare Disease Innovations Institute (RDII) are organizations focused on expanding access to newborn screening so that individuals can be diagnosed and treated much earlier for rare diseases. Join us in supporting them by making a donation. We’ll match donations of up to a total of $25,000 for each of these organizations. Together, we can give families the support they need, right from the start.
Centered on real experiences navigating newborn screening, the Genetic Alliance created the Baby’s First Test program to provide up-to-date information, support and services for families today and every day.
Through grass roots education and policy, Rare Disease Innovations Institute (RDII) goes beyond every day to accelerate diagnosis, enable access to treatments and improve the quality of life for those living with rare disease with newborn screenings being a primary focus.
Stories That Go Beyond.
We’re inspired by Mason and Levi, whose stories of living with rare diseases reflect the experiences of countless other individuals and families who go beyond for each other, every day.
“I’m incredibly hopeful for what the future holds and excited to brag about all of Mason’s future accomplishments.”
—Steven, Mason’s father
“Levi’s life may not be the one we had planned, but it is and will always be a life full of hope, faith, and immense love.”
—Perlita, Levi’s mother
Share How You Go Beyond.
You are rare. We want to connect with you and help share your story to show the world what everyday life with a rare disease looks like. The good days. The challenging ones. And all the days in between.
Stay Informed
Get the latest updates and news about rare diseases and opportunities on how you can go beyond to support the community.
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and every day, with this social media kit.
Learn more about Rare Disease Day and how you can go beyond and get involved.
