For 35 years, ORSA Canada has been a driving force in shaping the landscape for Rett syndrome in Canada. What began as families searching for answers has grown into an organization dedicated to awareness, care, research, and equity for Canadians affected by Rett syndrome.

 

Over the past three and a half decades, ORSA has helped bring Rett syndrome out of isolation and into broader conversations. Through education and awareness efforts, ORSA has supported greater understanding of this rare and complex neurodevelopmental condition. By connecting families across the country, ORSA has fostered a strong community where families can share experiences, knowledge, and support, ensuring no one has to navigate Rett syndrome alone.

 

Advocacy has always been at the heart of ORSA’s work. The organization has engaged with decision makers at multiple levels to push for policies, funding, and recognition that reflect the lifelong needs of individuals living with Rett syndrome.

ORSA has also supported families as they navigate healthcare, education, and social systems, working to reduce gaps in access to services and supports. ORSA has played an important role in advancing clinical care and research in Canada by supporting Rett-focused research and clinical trials, promoting clinical expertise, and strengthening connections with the broader scientific and advocacy community. Today, ORSA continues to advocate for fair and timely access to emerging therapies and treatments so that Canadians have the opportunity to benefit, regardless of where they live.

 

As we reflect on 35 years, we honour the families who paved the way, the volunteers and leaders who gave their time and heart, and the community that continues to raise its voice. The work is not finished, but because of ORSA Canada, families are no longer alone, and the future holds greater possibilities than ever before..