About Global Genes
Global Genes is a globally connected community committed to eliminating the challenges of rare disease by helping people find and build communities, gain access to information, services, care and resources, and providing hope and support for people affected by rare disease.
Focus Areas
rare disease advocacypatient servicesresearch data platformsclinical trial recruitment supporteducation and trainingcommunity buildingevents and convenings
Who They Fund
communities experiencing health disparities / underserved populationscommunity-based groups and grassroots organizers (meet-ups)people needing mental health services or peer support
Funding Style
About Global Genes
Global Genes’ grantmaking is shaped by rare disease patient advocacy, with awards that support mental health, health equity, community convening, and research readiness for rare patient groups. In 2025, it issued multiple $9,000 Mental Health Impact Grants, including to The Sumaira Foundation and the Pediatric Brain Tumor Foundation, showing a steady emphasis on patient support rather than large institutional awards. The foundation also uses targeted program names to route funding to specific needs, such as the Health Equity in RARE Patient Impact Grant and RARE-X Sponsored Research / Sponsored Projects. Recent grants point to a networked approach: Global Genes backs patient organizations working on outreach, education, awareness, and engagement for underserved communities, while also supporting projects tied to data collection, research preparedness, and patient resources. Grants have gone to groups serving distinct rare disease communities, including Pfic Network, Angelman Syndrome Foundation, and Lymphangiomatosis & Gorham's Disease Alliance. The pattern suggests a funder that works through patient advocacy organizations and community-based rare disease groups, using relatively focused grants to support direct services, education, and capacity-building projects.
What Global Genes Funds
Health equity is one of the clearest themes in Global Genes’ recent grantmaking. The foundation gave $15,000 to Combinedbrain Inc for a Health Equity Grant and another $15,000 to Scn2a Asia Pacific for the same grant type, both tied to underserved or underrepresented patient communities. Mental health support is another recurring area. It awarded $15,000 to Beautiful You Mrkh Foundation Inc for a Mental Health Grant and $14,179 to New England Hemophilia Association for a Mental Health Grant. In 2025, it continued that emphasis with Mental Health Impact Grants of $9,000 each, including to National Foundation for Ectodermal Dysplasias and Oxalosis & Hyperoxaluria Foundation. Community convening also appears in the grant list. Global Genes gave $15,000 to Helping Hands for Gand Inc for Meet-Ups Grants and $11,137 to Congenital Hyperinsulinism International for the same category, pointing to support for peer connection and organized community gatherings.
How Global Genes Gives
Global Genes’ typical awards are small and targeted: the p25 grant size is $7,500, the median is $10,568, and the p75 is $15,000. Recent grants cluster tightly around $9,000 to $15,000, which fits a programmatic model rather than large open-ended awards. The foundation appears to work through recurring program areas such as health equity, mental health, and meet-ups, with some recipients appearing more than once across years, including Phelan-mcdermid Syndrome Foundation and Team Telomere. It funds through named grant programs and sponsored projects, and the RARE Impact Grant Opportunities program does not accept unsolicited applications, while the Health Equity in RARE Patient Impact Grant does.
Financial Snapshot
Annual Giving
$523K
Total Assets
$1.5M
Total Revenue
$7.1M
Total Expenses
$7.4M
Typical Grant Size
Most grants fall between $8K and $15K, with a median of $11K.
25th Percentile
$8K
Median
$11K
75th Percentile
$15K
Geographic Reach
National23 states funded
About 0% of grants go to recipients in FL.
Funding intensity
LowHigh
Headquarters
Leadership
CHARLENE SON RIGBY
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