Support
The National Organization for Rare Disorders was established in 1983 by individuals and families with rare diseases.
Genetic Alliance, established in 1986, lists information and support groups for approximately 1200 rare diseases.
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). Global Genes promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. 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™, Wear That You Care™, 7,000 Bracelets for Hope™ to represent the 7,000 different rare diseases and Unite 1 Million For RARE™ disease.
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.
Patients with Rare Diseases in Greece are represented by the Greek Alliance of Rare Diseases.
Read more about this topic: Rare Disease
Famous quotes containing the word support:
“The sceptics assert, though absurdly, that the origin of all religious worship was derived from the utility of inanimate objects, as the sun and moon, to the support and well-being of mankind.”
—David Hume (1711–1776)
“The community and family networks which helped sustain earlier generations have become scarcer for growing numbers of young parents. Those who lack links to these traditional sources of support are hard-pressed to find other resources, given the emphasis in our society on providing treatment services, rather than preventive services and support for health maintenance and well-being.”
—Bernice Weissbourd (20th century)
“In the middle years of childhood, it is more important to keep alive and glowing the interest in finding out and to support this interest with skills and techniques related to the process of finding out than to specify any particular piece of subject matter as inviolate.”
—Dorothy H. Cohen (20th century)