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As part of our mission, we strive to improve the experience of living with a rare disease by providing support to many organizations that offer crucial programs and services for people living with rare diseases.

The #RAREis Global Advocate Grant was established in 2022 to support the rare disease community by providing financial assistance to global advocacy groups working to advance, educate and address the needs of the community.

In 2024, we committed to provide 75 one-time $5,000 grants to global rare disease advocacy organizations to support programs and disease education initiatives. Please complete the application below to submit your organization for a #RAREis Global Advocate Grant by 5 p.m. CT on May 31, 2024. Recipients will be announced in August.

To qualify for consideration, an organization must be considered a non-profit organization, focused on supporting the rare disease community outside of Amgen’s disease states, all funds will be used in the year received and no healthcare providers will be receiving benefit from this grant. Past grant awardees are eligible to reapply and receive repeat funding.

Download the 2024 #RAREis Whitepaper: Shared insights and opportunities to drive progress across the rare disease community

#RAREis engaged Global Advocate Grant awardees representing 14 countries through a survey and live summit to discern the biggest challenges advocacy groups from around the world face and areas for opportunity.

Read the findings that uncover valuable insights around barriers affecting access to care, funding obstacles, mental health challenges, the hurdles impeding diversity, equity and inclusion and opportunities for collaboration in the rare disease community.

2022 and 2023 #RAREis Global Advocate Grant recipient Sarita Edwards started the E.WE Foundation after her son was diagnosed with a rare genetic disease. Watch as she shares how she has expanded her organization to ensure patient communities have equitable access to quality healthcare.

2023 #RAREis Global Advocate Grant recipient Dr. Harsha Rajasimha has dedicated his life to researching, supporting and advocating for those impacted by a rare disease. Watch as he shares how he’s making a difference for the global rare disease community through his foundation, Indo US Organization for Rare Diseases.

We’re no longer taking applications. Recipients will be announced in August.

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