-- In 2023, 50 global patient advocacy groups will be eligible to receive a one-time, $5,000 grant --
-- Livestream with #RAREis Global Advocate Grant recipients discussing global challenges in rare disease to be held on Feb. 28 at 9:55 a.m. ET --
Horizon Therapeutics plc (Nasdaq: HZNP) today announced that applications for its 2023 #RAREis Global Advocate Grant are open through March 31, 2023. 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, the company awarded 30 grants to advocacy organizations.
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.
With an estimated 400 million people worldwide living with a rare disease, the need for support and funding is critical to advance educational programs, research and improving care. Horizon launched the program in 2022 and 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 genetic variant. Grant recipients used funding to establish new programs, develop educational resources and expand their current offerings to support their disease communities.
“Addressing problems in rare disease can mean the difference in saving a life – the families we serve are facing clinicians and a healthcare system that often refuse their care because the disease is deemed incompatible with life,” said Sarita Edwards, chief executive officer, E.WE Foundation and 2022 #RAREis Global Advocate Grant recipient. “Last year, the grant allowed us to change the narrative around Edwards Syndrome and educate others so we can prevent other families from going through what we went through.”
This year, advocacy groups will be eligible to receive a one-time, $5,000 grant. For more information and to apply, visit RAREiscommunity.com/Grant. Applications are open from Tuesday, Feb. 28 to Friday, March 31, 2023. Fifty recipients will be announced in July.
“Rare disease advocacy is often driven at the local level, propelled by families and people touched by a rare disorder, passionate about finding a cure and providing support for their loved ones,” said Matt Flesch, vice president, communications and patient advocacy, Horizon. “The #RAREis Global Advocate Grant program provides essential one-time funding to increase the growth, reach and impact of small, rare disease focused non-profit organizations.”
Horizon will be hosting a global conversation, “#RAREis Global Advocate Grant: Addressing Issues in the Global Rare Disease Community,” moderated by Michelle Rivas, senior manager, communications, Horizon and featuring 2022 #RAREis Global Advocate Grant recipients: 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, Ph.D., co-founder and president, AGO2 Association in Switzerland. The panel will discuss the current work being done to support people living with the more than 7,000 known rare diseases around the world. Registration for the webinar is available here.
In February of 2017, Horizon launched the #RAREis program aimed at elevating the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The program is anchored by an Instagram page and website that showcases photos and stories of people touched by rare disease and captures elements of their patient, caregiver or advocate experience. To learn more, visit the #RAREis Instagram and Facebook page and visit the website at www.RAREisCommunity.com.
Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. Our pipeline is purposeful: We apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, visit www.horizontherapeutics.com and follow us on Twitter, LinkedIn, Instagram and Facebook.
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Senior Manager, Communications