Our patients are at the center of everything we do.
That’s why we partner with more than 64 patient advocacy groups, from large global and regional umbrella organizations to small, local disease-specific groups, addressing the needs of many people, from those living with common disorders to those struggling with very rare diseases.
Each year, our 2,000 employees take part in advocacy events around the world, supporting people living with diseases that many of our medicines help treat, including rare, autoimmune and severe inflammatory conditions. Through these interactions, we’re able to listen, learn and support the creation of new resources that address the most pressing unmet needs of patients, caregivers and health care professionals.
In addition, the following are examples of communities we’ve built with input from patients, families and advocacy organizations:
#RAREis began as a social media campaign launched by Horizon to elevate the voices, faces and experiences of the rare disease community. It has since grown into a program that provides people living with rare diseases and their families access to resources as they navigate their daily lives. The hashtag (#) remains in the name and logo, and creates a way to join and follow the ongoing #RAREis conversation.
#RAREis has launched several unique initiatives in partnership with nonprofit organizations to address the unmet needs of individuals impacted by rare diseases.
- The #RAREis Scholarship, in partnership with the EveryLife Foundation for Rare Diseases, provides financial support to enable adults living with rare diseases complete lifelong educational goals and life enrichment activities.
- The #RAREis Adoption Fund, in partnership with Gift of Adoption, helps facilitate global adoptions of children with rare diseases by providing financial assistance to complete the final steps of adoption.
- The #RAREis Playlist, in partnership with the Sing Me a Story Foundation, elevates the stories of children living with rare diseases through songs written and performed by professional songwriters and musicians.
- #RAREis Representation, in partnership with several advocacy groups, elevates the global unmet need for diversity, equity, inclusion and allyship in rare disease.
CGD Connections is a community resource for people with chronic granulomatous disease (CGD), a rare disease affecting about 1 in every 200,000 people in the United States. Through a dedicated Facebook page, CGD Connections offers practical advice and helpful information about living with and managing CGD, as well as a place to share with others living with CGD.
Cystinosis United is a community resource dedicated to helping people with cystinosis, a rare, genetic metabolic condition. Our website and Facebook page provide education about the disease, as well as tips for living with cystinosis, including guides for talking with children, planning for school and college, and more. The page also links the community to resources and events provided by leading cystinosis and rare disease advocacy organizations.
Gout Revealed takes a look at what it’s really like to live with gout, a painful and debilitating inflammatory condition. Our website and Facebook page include stories from people living with gout about their journeys, including missed moments and challenges.
Listen to Your Eyes provides education and support for people who are living with Thyroid Eye Disease (TED) – a rare, serious, progressive and potentially vision-threatening autoimmune disease. It was created with guidance from the TED community to help others learn about TED, connect with one another and get inspired to advocate for their eye health.
Created with input from the neuromyelitis optica spectrum disorder (NMOSD) community, NMOSD Won’t Stop Me provides unstoppable stories, information and support for those who are living with or caring for someone with this rare, serious and unpredictable disease. The page also links the community to resources and events provided by leading NMOSD and rare disease advocacy organizations.
To learn more, visit the website, NMOSDWontStopMe.com.
Created in collaboration with people living with a urea cycle disorder (UCD), their families, caregivers and health care professionals, UCD in Common offers supportive, educational and interactive resources. A website and Facebook page provide shareable videos and lifestyle tips, as well as low-protein recipes for people living with a UCD who must restrict their protein intake because of its effect of elevating ammonia levels.