Alabama Governor Kay Ivey established the Alabama Rare Disease Advisory Council in 2017 to serve as an advisory body to the governor and the Alabama Legislature. Our focus is on research, diagnosis, treatment, and education regarding rare diseases and their economic impact on the state. Our Council comprises 17 members representing distinct areas of expertise in medicine, research, advocacy, and government policy. The governor nominates each member to fulfill a three-year term of service.

Alabama Rare is a grassroots organization to unite Alabama around the rare disease population. It acts to bring support for individuals & families, educate the broader community, bring awareness to the population's needs, and advocate for necessary change to improve healthcare delivery. It aims to celebrate what we have in our backyard, and collaborate with stakeholders to move rare disease diagnostics, policy, delivery of care, and patient experience forward.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983. There are over 7,000 rare diseases. 1 in 10 have a rare disease. Which means the total number of Americans living with a rare disease is estimated to be ~30 million and in Alabama ~500,000. 95% of rare diseases do not have an FDA approved therapy.

The E.WE Foundation is a global healthcare advocacy organization for families with rare diseases.  They provide resources and support to families impacted by Trisomy 18 (Edwards Syndrome), and other rare diseases, while changing the medical perspective through advocacy, education, and public policy. They believe patients with chronic and terminal illness should have immediate access to quality of life solutions, quality healthcare, medical resources, and economic support, without bias or prejudice.

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.

Founded in 2003, Cure JM is a family of families seeking a future when every child is free from JM.  They are paving the way to better treatments for JM while improving the lives of families affected by the disease.  

The Alabama Parent Education Center (APEC) is a non-profit 501c3, organized in 2002 by Alabama parents, educators, and professionals serving families. APEC provides services and supports to assist families particularly those underserved including minority, low-income, and those with children with disabilities.

APEC provides parents with training, information, and support to help them become meaningful participants in their children’s education and lives.