Across the rare disease community, advocacy organizations are working every day to support patients and families, expand access to resources, and advance understanding. Amgen and RAREis are proud to work alongside these partners, helping connect individuals to trusted resources and amplifying the work that strengthens the rare disease community.
Through policy, research, and community-driven advocacy, the EveryLife Foundation for Rare Disaeases works to improve outcomes for people living with rare conditions. In partnership with RAREis, the Foundation also co-created the RAREis Scholarship Fund, helping support students and build the next generation of rare disease leaders.
Representing more than 30 million Americans living with rare diseases, NORD connects patients to the resources, care, and support they need. The organization also plays a central role in advancing research, shaping policy, and strengthening the broader rare disease ecosystem.
At the heart of Global Genes is a commitment to making the rare disease journey less isolating. Through education, advocacy, and community-building, the organization brings together patients, caregivers, researchers, and industry leaders to drive collaboration and improve outcomes.
The Vasculitis Foundation is the leading global organization dedicated to diagnosing, treating, and curing all forms of vasculitis. Through research, education, and patient support, the Foundation works to improve diagnosis, expand treatment options, and enhance quality of life for those living with vasculitis.
For more than a century, Prevent Blindness has worked to protect and preserve vision through patient advocacy, education, and public health initiatives. Today, the organization continues to lead national efforts to improve access to care, advance research, and strengthen prevention across the eye health community.
Founded and led by patients, The TED Community Organization provides trusted information, emotional support, and connection for people living with thyroid eye disease. Through programs and global collaboration, it is redefining what it means to live with TED and empowering patients to take an active role in their care.
Foundation Fighting Blindness is the driving force in the global development of treatments and cures for ophthalmic diseases. They also provide education, mental health resources, and networking opportunities for patients with TED and other ophthalmic diseases.
IgG4ward! Foundation is the first organization dedicated to supporting the IgG4-related disease community. Through education, advocacy, and connection, it works to reduce misdiagnosis and improve outcomes for individuals navigating this complex autoimmune condition.
The Sumaira Foundation is dedicated to raising awareness of neuromyelitis optica spectrum disorders (NMOSD) and other rare neuroimmune conditions. Through advocacy, education, and global outreach, the organization is helping bring visibility and support to a community that is often overlooked.
For individuals living with myasthenia gravis, the Myasthenia Gravis Foundation of America (MGFA) provides critical support through education, patient services, and advocacy. The organization also plays a key role in advancing research and collaboration to accelerate better treatments and work toward a future without MG.
Gout Support Group of America is a patient-led nonprofit helping patients and caregivers understand uncontrolled gout, explore real treatment options, and finally get the clarity and community patients may have been missing.