Meet the 2025 Global Advocate Grant Recipients

We believe in the power of shared experience and the potential that comes when voices are heard, connections are made, and communities are strengthened. The RAREis 2025 Global Advocate Grant continues that commitment by supporting 25 dedicated organizations working with rare disease communities around the world.

Across continents and communities, these recipients represent the many faces of rare disease, and together they’re driving the kind of meaningful, lasting change that strengthens the global rare disease community.

In 2025, funding will power a wide range of initiatives—supporting a congressional advocacy day in the United States, hosting a regional rare disease summit in South America, convening a cross-border conference in Europe—focused on collaboration and shared learning.

Several organizations will use the grant to launch new multimedia awareness platforms, produce educational videos, and translate vital materials into new languages to reach more communities. Others are developing new patient resources, building peer mentorship programs, and expanding family assistance efforts to meet patients where they are.

Together, these initiatives reflect the ambition and creativity of this year’s group of 25 recipients and the impact that becomes possible when the rare disease community is supported, activated, and invested in.

Let’s meet the 2025 grant recipients.

Angelman Syndrome Foundation (United States – IL)
Avery’s Hope (United States – PA)
CACNA1A Foundation (United States – CT)
CFC International (United States – FL)
Coffin-Siris Syndrome Foundation (United States – WA)
CureGRIN Foundation (United States – CO)
Hope in Focus, Inc. (United States – CT)
International Pemphigus & Pemphigoid Foundation (United States – CA)
MitoAction (United States – MI)
Neev Kolte & Brave Ronil Foundation (United States – CA)
PC Project (United States – UT)
PAP Alliance (United States – CO)
The Rory Belle Foundation (United States – CO)
The United MSD Foundation (United States – MS)
Association Espoir de Noisette (France)
Associação Angelman (Brazil)
FECOER (Colombia)
HAE Junior (Czech Republic)
Hand in Hand Association (China)
LIFE Association for Rare Diseases in Children (Serbia)
Nävus Netzwerk Deutschland e.V (Germany)
NGO Rare Diseases of Ukraine
Pro Rare Austria
PTSR Polish MS Society
Usher Syndrome Ireland

The RAREis Global Advocate Grant is part of Amgen’s RAREis program, which is creating a rare disease ecosystem where support sparks learning, learning fuels clarity, clarity inspires advocacy, and advocacy grows leaders who drive change.

Grant recipients were selected through a merit-based review process aligned with the goals of the RAREis Global Advocate Grant. Recipient organizations are independent entities, and the award of a grant does not constitute an endorsement of any organization or its programs.

To learn about past recipients, read Empowering Change and Elevating Voices: 2024 #RAREis Global Advocate Grant and Commemorating the 2023 #RAREis Global Advocate Grant Recipients.