--Thirty global patient advocacy organizations selected to receive financial support to advance programming for rare disease communities --
Horizon Therapeutics plc (Nasdaq: HZNP) today announced the 30 patient advocacy organizations selected to receive the inaugural #RAREis Global Advocate Grant, which awards each a one-time grant of $5,000 to advance, educate and address the needs of the rare disease community.
Horizon received more than 120 applications, from 12 countries, spanning nearly 100 different rare diseases. The 30 organizations awarded the grant represent nine countries and 29 different rare diseases.
“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,” said Matt Flesch, vice president, communications and patient advocacy, Horizon. “It was incredibly inspiring to read through the award applications and learn about the efforts among rare disease organizations around the world. 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.”
The grant funds will be used to support the rare disease communities in a variety of ways, including building educational assets to better inform patients and caregivers, building a stronger online infrastructure and presence for increased accessibility and supporting annual conference expenses by providing on-site childcare.
Applications required information about how the organizations are currently working to support the rare disease community and how the grant would help to further support their ability to deliver on their missions and goals for the remainder of the year.
Rare diseases impact more than 400 million people worldwide, and for some, living with a rare disease can feel isolating and lonely. The #RAREis Global Advocate Grant aims to build connections and amplify support by uplifting the current work being done in the community to better understand and address the challenges the rare disease community face.
For more information about the program and to view the full list of the recipient organizations, click 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.