-- New website features resources, transitions support and personal stories of people living with rare diseases --
Horizon Therapeutics plc (HZNP) today announced the launch of RAREisCommunity.com, a go-to resource for the more than 350 million people around the world living with rare disease. This website is the latest expansion of Horizon’s #RAREis™ program, which aims to elevate the voices, faces and experiences of the rare disease community. The program started in 2017 with an Instagram page and has since grown to include the RAREisPlaylist.com and the #RAREis Adoption Fund.
“One common theme that has arisen from our conversations with families and advocates in the rare disease community is the need to bring together resources and advice to help those living with rare diseases and their caregivers navigate through the challenges of life’s transitions,” said Ann Marie Bingo, associate director, patient advocacy, Horizon. “Rare disease journeys are unique, but the story of one person’s rare disease journey can have an incredible impact in the lives of many.”
A dedicated section of the website, #RAREis Transitions, serves as a resource hub for families impacted by rare disease that explains how to plan for life transitions such as guardianship and future care coordination as well as ways how to secure education and start a career. Horizon partnered with several patient advocacy organizations that share a common goal in supporting people living with rare diseases to develop the site content and strategy.
The website also focuses on real stories and experiences of living with a rare disease through reader submitted blogs and aims to bring awareness of unique rare disease experiences and build connections in the community.
“Although growing up rare has presented unexpected challenges, I am grateful to those who have helped me along my journey and inspired me to find my passion in life,” said Skyler DiPalma, rare disease advocate living with Alexander’s disease. “Tackling life’s milestones while living with a rare disease can be trying, but it can be done.”
To learn more about the #RAREis program, visit RAREisCommunity.com.
In February of 2017, Horizon launched #RAREis, an initiative that aims to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources for the rare disease community. The initiative 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 page and visit the website at www.RAREisCommunity.com.
Horizon is focused on researching, developing and commercializing medicines that address critical needs for people impacted by rare and rheumatic 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, please visit www.horizontherapeutics.com, follow us @HorizonNews on Twitter, like us on Facebook or explore career opportunities on LinkedIn.