Advocate for Rett Syndrome
Advocacy improves the quality of life for individuals living with Rett syndrome. Together we can push for accessible & affordable care and secure funding for critical research towards treatments and a cure. Our unified voice can lead to real-world change.
Advocating for YOU.
The International Rett Syndrome Foundation (IRSF) works tirelessly to advocate for you and your loved one with Rett syndrome. Our work takes many forms, our persistence is often unseen, and our successes are the result of countless hours spent meeting with, raising awareness, and educating key decision-makers on the needs of our Rett community. We advocate for:
More Funding for Research
Research requires significant funding—far beyond what any single patient advocacy organization, including ours, can provide alone. That’s why securing federal funding each year is essential to driving progress in Rett syndrome research and ensuring continued advancements.
Investments from Industry and Biopharma
Collaborating with industry partners and biopharmaceutical companies is critical to advancing Rett syndrome treatments. Their investment in resources, expertise, and infrastructure is essential for completing successful clinical trials and ensuring that therapies can be effectively developed, scaled, and delivered to patients worldwide.
Accessible & Affordable Care
It is vital that insurance companies and state Medicaid programs cover current and future treatments to ensure every individual with Rett can benefit. Without equitable access, the promise of new treatments cannot reach all those who need them most.
Make Your Voice Heard
Use our advocacy tool to explore current issues impacting the Rett community. You can urge Congress to support federal funding, raise awareness with your state elected officials to ensure affordable access, and more. Just enter your address to find your elected officials, update the letter template, and send in minutes.
Our Impact
Advocacy in Action
in federal funding secured through the CDMRP for Rett research since 2016.
letters written by our Rett community to elected officials.
U.S. Representatives signed on to the House Support Letter for FY25 (the most ever!)
FDA-approved treatment expedited through the Rare Pediatric Disease Priority Review Voucher.
states and their officials contacted by the Rett community.
State Proclamations
Governors in several states have honored our efforts by signing proclamations declaring October to be Rett Syndrome Awareness Month in their states.
These downloadable resources can help you contact your Governor to obtain a proclamation in your state:
Questions?
Contact us with questions about our advocacy work and how you can use your voice to shape the future of Rett syndrome.
Help Us Advocate for Every Individual with Rett
Our work of advocating for families and strategically funding innovative research is only possible thanks to the many donors who make our mission possible. Give now to help us continue our efforts on behalf of every Rett family.