Events and Conferences

What's Ahead

Featured Conference

2026

Cure Within Reach Gala 2026

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Upcoming Events

Past Events

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 Conferences

Past Events

2026

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.

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Next Steps: Newly Diagnosed Support Group

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

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Virtual Sibshop!

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

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Community Caregiver Chat

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

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Hunter syndrome Friends and Family Gathering

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.

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Unseen: How We are Failing Parent Caregivers and Why It Matters

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.

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July Virtual Sibshop

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All Past Events

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.

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