Events and Conferences

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.

Our next group meeting will be help on Tuesday December 16th at 8pm (EST).

Join us for our next virtual Sibshop! on Friday November 7th at 8pm (EST).

Join Us Tuesday October 21st at 8pm (EST) for our next caregiver community chat!

Please join us as we celebrate the county of San Bernadino officially recognizing the 3rd week of October as Hunter syndrome Awareness Week! Bring your family and friends to Big Al's in Ontario for a time of recognition, joy and solidarity.

It’s a common story among parent caregivers: the isolation, uncertainty about the future, lack of options, and a never-ending daily to-do list means the role of caregiver overpowers nearly every other facet of life. Video diaries from diverse caregivers featured in the film illustrate this universality, while interviews with mental health and policy/legal experts provide a broader view on the societal impacts. Through the power of unfiltered, compelling human stories, Unseen cultivates compassion and tangible support for the caregivers in our communities.