Applications for the 2022 RARE Meet-Ups Grants have closed. Congratulations to our 2022 Rare Meet-Up grant winners:

Projects may fall under one of the following categories:
  • Caregiver/Patient Support: For meet-ups focused on broader patient/caregivers support across the community, including (but not limited to) topics such as family/sibling support, mental health, navigating the health care system in your region, or addressing the local and long-term impacts of COVID
  • Scientific Updates and/or Clinical Research: For meet-ups focused on scientific data, clinical trials, or patient registries, including (but not limited to) convening researchers to discuss specific diseases or larger disease classifications or educating your community about your registry or natural history data
  • Capacity Building: For meet-ups focused on capacity building to expand your organization’s work on fundraising, volunteer expansion, community outreach, or addressing the local and long-term impacts of COVID
  • Ultra Rare Diseases: For meet-ups focused on rare ultra rare diseases to increase awareness and/or improve the diagnostic odyssey by early testing, including (but not limited to) clinical guidelines from experts on early detection or understanding the significance of a diagnosis

Helping Hands for GAND held its 3rd GAND Gathering & Scientific Conference in July, and Global Genes is happy to share the experiences of several family members who attended the conference.

August 26, 2022
Helping Hands for GAND: The Hammond Family
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August 26, 2022
Helping Hands for GAND: The Carney Family
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August 26, 2022
Helping Hands for GAND: The Fernandes Family
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