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:
“She isn’t harassed. She’s busy, and it’s glamorous to be busy. Indeed, the image of the on- the-go working mother is very like the glamorous image of the busy top executive. The scarcity of the working mother’s time seems like the scarcity of the top executive’s time.... The analogy between the busy working mother and the busy top executive obscures the wage gap between them at work, and their different amounts of backstage support at home.”
—Arlie Hochschild (20th century)
“An ordinary man will work every day for a year at shoveling dirt to support his body, or a family of bodies; but he is an extraordinary man who will work a whole day in a year for the support of his soul. Even the priests, men of God, so called, for the most part confess that they work for the support of the body.”
—Henry David Thoreau (1817–1862)
“The wisest thing a parent can do is to let preschool children figure out themselves how to draw the human figure, or solve a whole range of problems, from overcoming Saturday-morning boredom to dealing with a neighborhood bully. But even while standing on the sidelines, parents can frequently offer support in helping children discover what they want to accomplish.”
—John F. Clabby (20th century)