Patient Advocacy Overview
Our patients are at the center of everything we do.
That’s why we partner with more than 60 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 1,200+ employees take part in advocacy events around the world, supporting people living with diseases that many of our medicines help treat, including rare disorders and rheumatic conditions. Through these interactions, we’re able to listen, learn, and support the creation of new resources that address the most pressing unmet needs for patients, caregivers, and healthcare 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 disease and their families access to resources as they navigate their daily lives. The hashtag (#) is a way to follow the conversation and remains in the name and logo to represent the broader program and community.
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 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 in collaboration with people living with a urea cycle disorder (UCD), their families, caregivers and healthcare 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.