Horizon awards grants to 50 rare disease advocacy groups

The #RAREis Global Advocate Grant initiative apportions $5,000 to each

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

Share this article:

Share article via email
This illustration show several balloons, one of represents rare diseases.

Horizon Therapeutics has awarded grants to help support 50 organizations around the world that are focused on improving the lives of people with rare disorders such as Batten disease.

The grants were awarded through the company’s #RAREis Global Advocate Grant initiative, which launched last year with the aim of providing funding to help support advocacy organizations and build equity for people in the rare disease community.

“At Horizon, our inclusive approach to supporting patient advocacy groups helps these organizations address the most critical needs affecting their rare disease community,” Matt Flesch, vice president of communications and patient advocacy at Horizon, said in a press release.

Recommended Reading
A ribbon model of DNA highlights its double-helix shape.

Study probes clinical variability from mutations in Batten-linked genes

“We learn from every rare disease organization we interact with and are inspired by the diversity of initiatives advancing education, treatments and more,” Flesch said. “We find great meaning and purpose in this opportunity to help many different organizations — none of whom operate within any of the disease areas where Horizon makes medicines available — advance their mission.”

Each of the 50 organizations selected will receive a one-time grant totaling $5,000, which may be used to create new programs, develop novel educational resources, and expand each organizations’ programs to support their rare disease community.

Most of the selected organizations are focused on a specific rare disease, ranging from autoimmune disorders, to genetic conditions, to circulatory system problems.

Also among the selected winners are several organizations that focus on advocating for all people affected by rare diseases in specific places. These include the Indo US Organization for Rare Diseases in the U.S., Instituto Atlas Biosocial in Brazil, the Rare Disease Ghana Initiative in Ghana, Ireland’s Northern Ireland Rare Disease Partnership, the Philippine Society for Orphan Disorders, the NGO Rare Diseases of Ukraine in Ukraine, and the Healthcare Education Institute in Poland.

50 chosen from 190 grant applicants

The 50 winners were selected from nearly 190 applicants from 33 countries, representing more than 180 rare diseases.

The grants are part of Horizon’s #RAREis program, an initiative launched in 2017 with the aim of elevating the voices of people living with rare diseases and providing support and resources to the rare disease community. As part of the initiative, last year Horizon launched the #RAREis Representation program aiming to increase representation and inclusion of people from diverse backgrounds in the rare disease community.