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Rare Diseases
Freeman-Sheldon Parent Support Group 
The Freeman-Sheldon Parent Support Group is a nonprofit organization that provides information and emotional support to individuals and parents of children with Freeman-Sheldon Syndrome. This syndrom... Details >
Human Growth Foundation
The Human Growth Foundation (HGF) is a national organization of volunteers concerned with child growth abnormalities, specifically dwarfism of all forms, whether caused by pituitary growth hormone def... Details >
Incontinentia Pigmenti International Foundation, Inc.
Founded in 1995, the Incontinentia Pigmenti International Foundation, Inc. is a non-profit organization of patients, physicians, educators, parents, relatives, and volunteers striving to take leadersh... Details >
Klippel-Trenaunay Syndrome Support Group
The Klippel-Trenaunay Syndrome Support Group's mission is to provide support for K-T Syndrome patients and their families. Their objectives in accomplishing this mission are: to act as a support grou... Details >
Lowe Syndrome Association, Inc.
The Lowe Syndrome Association, Inc. (LSA) fosters communication among families of boys with this genetic disease. LSA provides information on the syndrome and supports research. It also sponsors con... Details >
Madisons Foundation
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication... Details >
MUMS National Parent-to-Parent Network, Mothers United for Moral Support, Inc.
MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS' mission to provide supp... Details >
National Endocrine and Metabolic Diseases Information Service, National Institute of Diabetes and Digestive and Kidney Diseases
The National Endocrine and Metabolic Diseases Information Service (NEMDIS) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the Nation... Details >
National Niemann-Pick Disease Foundation, Inc.
The purpose of the National Niemann-Pick Disease Foundation, Inc., is to provide medical and educational information to assist in the correct diagnosis and referral of children with Niemann-Pick Disea... Details >
National Organization for Rare Disorders, Inc.
The National Organization for Rare Disorders, Inc. (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizatio... Details >