|
Support Groups
Asociacion Osteogenesis Imperfecta
Support Group
IN SPANISH
Association for patients and families with OI, based in Madrid, Spain. Web site also has medical information.
DIASTROPHIC HELP
Resource
Web site for parents of children with diastrophic dysplasia. Information on adaptations that can be made to help a child with this condition be independent.
Double Dominance
Source/Author: Mary Ellen Little, ADN RNC
Support Group
Web site designed by the LPA bereavement coordinator for LPA. Support services for couples having a baby affected with double dominant or double heterozygote dwarfism (2 genetic doses of dwarfism) causing a lethal condition.
Ellis-van Creveld
Source/Author: Parent of boy with EvC
Support Group
Website for parents of individuals with EvC - informational and support.
Human Growth Foundation
Support Group
Home page for the Human Growth Foundation, helping children and adults with disorders related to growth or growth hormone through research, education, support and advocacy. Resources for patients/families with short stature
KSG (Kniest SED Group) page for Spondylometaphyseal Dysplasia (SMD) &Spondyloepiphyseal Dysplasia (SED) & Kniest
Source/Author: Ronna Griggs, PhD and Cecilie Birner, MA, individuals with these conditions
Resource
Web page with research and life experience on SEDc, SMD and Kniest dysplasia.
Restricted Growth Association
Support Group
Home page for support group in the United Kingdom for people of short stature
Robinow Syndrome Foundation
Support Group
We are a "little" group of families reaching out for one another's support on dealing with this medical rarity and how it affects all of our lives
Short Statured People of Australia
Support Group
Home page of support group for people of short stature in Australia
Turner Syndrome Society
Support Group
National support group for girls and women with Turner syndrome.
ASOCIACION PARA PROBLEMAS DE CRECIMIENTO
Source/Author: La Asociacional para Problemas de Crecimiento, CRECER
Resource
IN SPANISH.
Web site on problems of growth. Information on many syndromes/conditions that result in decreased growth/short stature/dwarfism
|
