Rare Disease Groups Win Horizon’s #RAREis Global Advocate Grants

A total of 30 patient advocacy groups working to further understanding and the needs of people living with rare diseases have been selected to receive a Horizon Therapeutics‘ #RAREis Global Advocate Grant.

Winners of this year’s inaugural awards are spread across nine countries and represent a total of 29 rare disease communities.

Among them are the LGS Foundation and the Prader-Willi Syndrome Association USA, supporting people with Lennox-Gastaut syndrome and Prader-Willi syndrome in the U.S., as well as the Raising Hope International Friends for people living with sickle cell disease in Uganda and the Foundation for Neuromuscular Support Nigeria, a muscular dystrophy organization in that country.

Selected from over 120 applications spanning 12 countries, a full listing of awarded organizations is available. Each will receive a one-time grant of $5,000, for a total of $150,000, to continue supporting the rare disease communities they serve.

$5,000 grants part of Horizon’s #RAREis program

Projects include the creation of educational programs to better inform patients and caregivers, and enhancing online tools to increase accessibility. Grant money may also cover expenses for attending conferences by providing on-site childcare.

“This is what drives us — finding new ways of creating community and opportunity for all people living with a rare disease, as well as their loved ones and caregivers,” Matt Flesch, vice president of communications and patient advocacy at Horizon, said in a company press release.

The #RAREis Global Advocate Grant, launched in May, invited participation from non-profit groups worldwide focused on aiding one or more rare disease communities. In the U.S., a rare disease is defined as a condition affecting fewer than 200,000 residents, while the European Union defines a rare disease as one affecting no more than 1 in every 2,000 people.

Applications, open from May 2 to June 3, required organizations to detail their current work in supporting a rare disease community, and how awarded funds would aid in advancing goals set through the close of this year.

“It was incredibly inspiring to read through the award applications and learn about the efforts among rare disease organizations around the world,” Flesch said.

The #RAREis Global Advocate Grant is part of Horizon’s #RAREis program, which opened in 2017 to give greater voice and expression to people with rare diseases. Other initiatives were introduced through this program, such as the #RAREis Scholarship Fund, the #RAREis Adoption Fund, and the #RAREis Representation.

“As an organization, we believe in the power of connecting the rare disease community and that is why we have programs like #RAREis that seek to support the whole rare disease community — not just those diseases where we are developing or marketing medicines,” Flesch said.