Welcome to another part of Esmerel's Collection of
Disability Resources. This page is dedicated to genetic disorders
resources. This list is growing constantly. If you know of any
other resources or have suggestions, please email Heather.
- AGSA: Association of Genetic Support of Australasia "Facilitates support for those affected directly or indirectly by genetic conditions throughout Australasia.
- CCDD: Center for Craniofacial Development and Disorders "The mission is to care for patients, educate and perform research on craniofacial disorders."
- CLAPAI: Cleft Lip and
Palate Assocation of Ireland "Is a voluntary
group formed to provide support and informatin for
parents of children affected by cleft lip and palate and
those directly affected by the condition."
- Craniofacial Society for the UK & Ireland
- FACES: National Craniofacial Association "Dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident or birth."
- Friendly Faces "A resource and network of individuals with facial differences, parents, families, friends and health care professionals."
- Genetic Alliance "The nation's leading support, education and advocacy organization for all those living with genetic conditions."
- Genetic
and Rare Conditions Site
- Human Growth Foundation
"Helps children and adults with disorders
related to growth or growth hormones through research,
education, support and advocacy."
- Moebius Syndrome Support Network
- Neurofibromatis
Clinics Assocation
- Neurofibromatosis Inc "Is
an organization made up of independent state and regional
chapters, providing support and services to NF families.
In addition to asisting individuals and families, NF Inc
works closely with clinical and research professionals
who specialize in the treatment of
neurofibromatosis."
- Neurofibromatosis
Resources "One stop shopping for the best
neurofibromatosis information on the web."
- Proteus
Syndrome Foundation "Founded to support and
educate families and professionals and to raise money for
research to find a cure for individuals living with
proteus syndrome."
- Proteus
Syndrome Links
- Texas Neurofibromatosis
Foundation "We are committed to meeting the
needs of people challenged with neurofibromatosis by
providing care, comfort, support, information, education,
funding and other resources for its treatment, prevention
and cure."
- UK Cleft Lip and Palate
Association
- UK
Neurofibromatosis Association
- Velo-Cardio Facial
Syndrome Educational Foundation "Is an
international non-profit, self help organization
dedicated to providing support and information to
individuals who are affected by Velo-Cardio Facial
Syndrome, their families, physicians and other
practictioners."
- Wide Smiles
- World Craniofacial Foundation "A non-profit corporation that is dedicated to helping children obtain the life changing craniofacial surgery they deserve."
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This page is maintained by Heather