List of rare disease organisations

This is a list of non-profit organisation working in the area of rare diseases.

Europe

• European Organisation for Rare Diseases (EURORDIS)

United States

• The National Organization for Rare Disorders was established in 1983 by individuals and families with rare diseases.^[1][2]
• Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.^[3]
• 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).^[4] Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.^[5] 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™,^[6] Wear That You Care™,^[7] 7,000 Bracelets for Hope™^[8] 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.

Canada

• 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.^[9]

References

1. "About NORD". National Organization for Rare Disorders. 30 July 2008. Retrieved 14 February 2009.
2. "The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President". Reuters. 5 May 2008. Retrieved 14 February 2009.
3. "What is a Genetic Disease". Genetic Alliance. Retrieved 2012-09-24.
4. "Leadership". Globalgenes.org. Retrieved 2013-07-10.
5. "Genes Ribbon™". Globalgenes.org. 2013-02-28. Retrieved 2013-07-10.
6. "Patient Stories". Globalgenes.org. Retrieved 2013-07-10.
7. "Wear That You Care™". Globalgenes.org. 2013-02-28. Retrieved 2013-07-10.
8. 10 July 2013 By Ilana Jacqueline Leave a Comment. "7000 Bracelets for Hope™". Globalgenes.org. Retrieved 2013-07-10.
9. "Canadian Organization for Rare Disorders". Raredisorders.ca. Retrieved 2012-09-24.