Get Involved
Advocacy
Advocacy can feel overwhelming at first, but it doesn't have to be. You do not need to be an expert to make a difference. Whether you are a parent, sibling, friend, or supporter, you already have the most powerful tool: your story.
take action now
Your voice can create real change - starting today.
Whether you have 2 minutes or 20, there are simple ways to take action and make an impact for families affected by Hunter syndrome.
Quick Actions
Email Your Representatives
Use our pre-written message to contact your members of congress about key issues like newborn screening and treatment access.
Contact the FDA
Share your story and help decision-makers understand the urgency for timely approvals and access to therapies.
Sign and Share Advocacy Alerts
We're focusing our efforts where your voice can make the biggest difference.
- Newborn Screening for MPS 1&2: Help expand early detection so families can access care sooner.
- Access to Treatment and Policy Change: Advocate for policies that improve access to life-changing therapies.
- Timely FDA Decisions: Raise awareness about the importance of timely review and approval processes for rare disease treatments.
Take action on one (or all) of these campaigns today.
Fundraising Guide
Advocacy Resources
making change
Hunter Syndrome Awareness Week Recognition
Families across the US have been fighting to get Hunter Syndrome Awareness Week recognized by their local communities. Our list of successful recognitions continues to grow!
- Shelby County, TN
- Marin County, CA
- Alameda County, CA
- Contra Costa County, CA
- San Bernardino County, CA
Advocacy Organizations
Featured Organizations
- Surge to Save Newborns
- Cure NDD: X-linked consortium
- Denali Advocacy and Engagement Group
- NORD member
- Rare Degenerative Disease Alliance
- Various Newborn Screening Panels/Committees
- Critical Path for Lysosomal Disease – Patient Advocate Stakeholder
- Raregivers Coalition (not sure if this counts towards advocacy)
- Combined Brain: Patient Advocacy Group Board
- TN Rare Disease Advocacy Council
EveryLife Foundation’s Community Congress Organizations
- Regulatory Working Group
- Newborn Screening & Diagnostics Working Group
- Access & Value Working Group
Fundraising Guides
Hunter Syndrome Awareness Week Resources
November 14, 2026
Cure Within Reach Gala
Join us for an unforgettable evening at the Cure Within Reach Gala, a premier event dedicated to bringing hope to the Hunter syndrome community. Hosted at the beautiful Georgia Aquarium in Atlanta, GA.