Histiocytosis Nederland is the patient organization for histiocytic diseases such as LCH, HLH and FHL.
To promote and protect the health and well being of Alaskians.
Starlight Children’s Foundation is dedicated to improving the quality of life for children with chronic and life-threatening illnesses and life-altering injuries by providing entertainment, education and family activities that help them cope.
Shadow Buddies are condition-specific dolls designed to be a friend “just like me” for seriously ill or medically challenged children. Provide comfort to children, as well as effective method for educating newly-diagnosed children.
Provides low-cost, temporary housing for children and their families while undergoing treatment. Website includes listing of international locations.
Rainbows, the world’s largest grief support organization, is an international non-profit organization that fosters emotional healing among children grieving a loss from a life-altering crisis.
National non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis.
The Office of Rare Diseases Research (ORDR) at the National Institute of Health (NIH) coordinates research and information on rare diseases at the NIH and for the rare diseases community.
To continuously improve comprehensive systems of care that enhances the health, future and quality of life for children and youth with special health care needs and their families.
Federation of voluntary health organizations dedicated to providing information on the prevention, treatment, and cure of rare “orphan” diseases.