Global Genes is now accepting grant applications to support (financially and with additional resources) a series of US-based RARE Meet-Ups to take place between April and November 2022. These events should provide critical education and much-needed in-person collaboration for rare disease patients, caregivers, and advocates at the local level to help equip participants to better serve their rare communities.
- 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