Patient Advocacy Overview
When patients benefit, everyone benefits.
It’s a belief that we hold at our core and runs through everything we do. And it’s why we partner with more than 50 patient advocacy groups, from large global and regional umbrella organizations to small, local disease specific groups, addressing the needs of people living with common disorders to those struggling with very rare diseases.
Each year, our more than 1,000 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:
In February of 2017, we 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 campaign is anchored by an Instagram page that showcases photos of people touched by rare disease and captures elements of their patient, caregiver or advocate experience.
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.
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.