man speaking at podium

Events and Conferences

Upcoming Events

Past Events
February 25th
March for Rare
Project Alive and the MPS Society are proud to co-host March for Rare in Washington, DC. Over two powerful days, families, advocates, and community leaders will meet with members of the U.S. House and Senate and engage with leaders at the FDA to advocate for meaningful progress in rare disease policy and treatment access. In light of the recent Complete Response Letter (CRL) for RGX-121, our community is coming together to ensure our collective voices are heard. Join us as we stand united for urgency, innovation, and a future with better outcomes for individuals living with Hunter syndrome and other rare diseases.
group of people listening to speaker
boy at doctors smiling with thumbs up
panel speaking to group of listeners

A History of Hope

Looking Back At Past Events

We host and participate in events to raise awareness, promote research, and fundraise to support our cause. Our conferences are a place to participate in panels, hear from speakers, make connections with other families, and enjoy live entertainment.

Past Events

JOIN US

Building a Future Together

Hunter Syndrome Community Conference

March 13-15, 2026 | Costa Mesa, CA

 

 

Register