EveryLife Foundation for Rare Diseases Founded in 2009 by Dr. Emil Kakkis 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.[39]
Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.[40]
The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. (R.A.R.E stands for Rare disease, Advocacy, Research and Education).[41] Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.[42] What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations. Global Genes uses a simple concept of "genes and jeans" to broadly promote the needs of the rare and genetic disease community. The organization has launched a number of innovative rare and genetic disease awareness campaigns including, Hope, It's In Our Genes™,[43] Wear That You Care™,[44] 7,000 Bracelets for Hope™[45] to represent the 7,000 different rare diseases and Unite 1 Million For RARE™ disease. Other nonprofit organizations in the United States include the Rare Undiagnosed Network (RUN) and the Undiagnosed Diseases Network.
The Canadian Organization for Rare Disorders (CORD) is the national network of organizations who represent people affected by rare disorders within Canada. CORD's intention is to provide a strong common voice advocating for a healthcare system and health policy for those with rare disorders.[52]