Celebrating Rare Disease Day 2023

In honor of Rare Disease Day, #RAREis has opened applications for its 2023 #RAREis Global Advocate Grant program. To increase impact and support advocates who are catalysts for rare disease community needs, #RAREis will grant 50 groups with a one-time $5,000 grant. In 2022, 30 grants were awarded to global advocacy organizations. For more information and to apply, visit RAREiscommunity.com/Grant. Applications are open through Friday, March 31, 2023.

The #RAREis Global Advocate Grant expands communication and awareness for the rare disease community by providing financial assistance to patient advocacy groups working to advance, educate and address challenges faced by rare disease families. The program aims to build equity for the rare disease community by empowering and fostering growth for small, often overlooked advocacy organizations around the world.

After launching the program in 2022, #RAREis received more than 120 applications, from 12 countries, spanning nearly 100 different rare diseases. The 30 organizations awarded the 2022 #RAREis Global Advocate Grant represented 29 unique rare diseases and represented nine countries, including diseases so uncommon they do not have a name but are categorized by a genetic mutation. Grant recipients used funding to establish new programs, develop educational resources and expand their current offerings to support their disease communities.

Watch as 2022 recipients, Kris, Adrian and Sarita, share how the grant supported their organizations.

#RAREis held a global webinar conversation with an incredible panel featuring 2022 #RAREis Global Advocate Grant recipients that highlighted global issues impacting the rare disease community and the current work being done to support people living with the more than 7,000 known rare diseases around the world.

Missed the conversation? Watch below to hear from Sarita Edwards, chief executive officer, E.WE Foundation in the United States, Adrian Goretzki, LL.M, founder and president, Healthcare Education Institute in Poland and Nora Leonardi, PhD, co-founder and president, AGO2 Association in Switzerland.

Head over to our social media pages and Share Your #RAREis story.