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Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. Due to the COVID-19 global pandemic, and the threat this poses to the health and safety of our rare disease community, we are replacing this highly-anticipated event with the Global Genes LIVE! A RARE Patient Advocacy (un)Summit.
Throughout September, a variety of interactive and educational online events, meet-ups, workshops and performances will provide members of the rare disease community with opportunities to connect and engage with each other. Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can implement immediately to accelerate change.
September 14-25, 2020
Braedan’s Bridge StoreBraedan's Bridge’s mission is to raise...
Rare Disease DayRare Disease Day takes place on the last...
PTC Therapeutics Announces Winners of Global Duchenne Muscular Dystrophy Patient Group STRIVE Awards in Recognition ...PTC Therapeutics, Inc. is pleased to a...
Dealing for Duchenne – San AntonioDealing for Duchenne – San Antonio...
Kick Off Duchenne Action Month!Restock your family's supply of PPMD mer...
Cure Duchenne Kicks Off Inaugural ‘Pinkies Up to CureDuchenne’ Fundraising CampaignA campaign hopes to raise awareness of D...
Camp Promise Connect Program – VirtualThe mission of Camp Promise is to provid...