Avenues is a support group for individuals, families and medical professionals interested in Arthrogryposis Multiplex Congenita (AMC), a congenital condition characterized by multiple joint contractures. Includes listserv and chat groups (less)Avenues is a support group for individuals, families and medical professionals interested in Arthrogryposis Multiplex Congenita (AMC), a congenital condition characterized by multiple joint contractur... (more)

Tags: national disability organization, arthrogryposis multiplex congenita, growth disorder organization, muscular dystrophy, growth disorder listserv, growth disorder forum

Today, Barth syndrome is a rarely understood, frequently fatal, genetic disorder primarily affecting males. The Barth Syndrome Foundation is an engaged, global community whose mission is..."Saving lives through education, advances in treatment, and finding a cure for Barth syndrome. (less)Today, Barth syndrome is a rarely understood, frequently fatal, genetic disorder primarily affecting males. The Barth Syndrome Foundation is an engaged, global community whose mission is..."Saving liv... (more)

Tags: national disability organization, Barth Syndrome, Heart Disorder organization, Neutroopenia, Short Stature, fatal genetic disorder, genetic disorder organization, research resource, growth disorder organization, listserv, forum

Find information about characteristics associated with the disorder and be able to view photos of defined features that often manifest themselves in those affected by BWS.

Tags: national disability organization, overgrowth syndrome, growth disorder organization, rare disorder, rare disease, wilms tumor, medullary sponge kidney, diabetes insipdus

Dedicated to helping those dealing with the effects of rare histiocytic disorders by providing a variety of educational programs and emotional services.

Tags: national disability organization, Histiocytosis, growth disorder organization, liver disorder, lung disorder, pituitary tumor

We information to the public, parents with children who have disorders of growth, and adults with growth hormone deficiency, and any related endocrine or metabolic disorders or diseases.

Tags: national disability organization, Idiopathic Short Stature, growth disorder organization, short stature, pediatric growth hormone deficiency, GHD, AGHD, metabolic disorder organization, endocrine disorder

This web site is designed to provide information about SMD, SED and Kniest in clear and understandable English. Its purpose is to give people with these rare skeletal dysplasias the information and tools to do their own research. (less)This web site is designed to provide information about SMD, SED and Kniest in clear and understandable English. Its purpose is to give people with these rare skeletal dysplasias the information and to... (more)

Tags: national disability organization, growth disorder organization, short stature, dwarfism, spondyloepiphyseal dysplasia, spondylometaphyseal dysplasia, skeletal dysplasias, kniest

The MAGIC Foundation is a national non-profit organization created to provide services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. (less)The MAGIC Foundation is a national non-profit organization created to provide services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and di... (more)

Tags: national disability organization, congenital adrenal hyperplasia, adrenal disorder, chronic disorder organization, chromosome disorder organization, growth hormone deficiency, rare disorder, rare disease, thyroid disorder, turner syndrome, chronic renal insufficien

The MAGIC Foundation provides support for families of children with chronic and/or critical disorders that affect a child's growth. They have a wonderful kids' club program including a kids' newsletter, a place for kids to share stories, birthday club and pen pal program. (less)The MAGIC Foundation provides support for families of children with chronic and/or critical disorders that affect a child's growth. They have a wonderful kids' club program including a kids' newslet... (more)

Tags: national disability organization, growth disorder organization, short stature, hormone deficiency, thyroid

The Noonan Syndrome Support Group, Inc. is committed to providing current information and understanding to those affected by Noonan syndrome. It is also our goal to educate the medical community as to the complex nature of this syndrome and how it affects the lives of those who have it. (less)The Noonan Syndrome Support Group, Inc. is committed to providing current information and understanding to those affected by Noonan syndrome. It is also our goal to educate the medical community as t... (more)

Tags: national disability organization, Growth disorder organization, Heart disorder organization, Malignant Hyperthermia, Williams Syndrome, Noonan syndrome, genetic disorder organization, rare disorder, rare disease

The Turner Syndrome Society of the U.S. promotes research for all persons touched by Turner syndrome.

Tags: national disability organization, turner syndrome organization, growth disorder organization, genetic disorder organization, chromosome disorder organization, rare disorder, rare disease