Child, Teen, Young Adult Genetic Support Group

Children, teenagers, and young adults

with genetic conditions

Youth with Genetic / Birth Conditions

Taryn's World [Includes Agenesis of the Corpus Collosum, Alpha Mannosidosis, Apert Syndrome, Cardiofaciocutaneous Syndrome, Chromsome 11q Deletion, Coffin-Siris Syndrome, Cornelia de Lange, Cystic Fibrosis, Down Syndrome, Duchenne Muscular Dystrophy, Epidermolysis Bullosa, Fanconi Anemia, Gaucher Disease, Goldenhar Syndrome, GM1 Gangliodosis, Hirschsprung, Hunter Syndrome, Hurler Syndrome, Krabbe Disease, Leukodystrophy, Licenssephaly, Mitochondrial Myopathy, Mosaic Muscular Dystrophy, Noonan Syndrome, Partial Trisomy 11;22, Prader-Willi Syndrome, Rett Syndrome, Ring 22 Syndrome, Rubinstein-Taybi Syndrome, Sanfilippo Syndrome, Sotos Syndrome, Tay-Sachs, Trisomy 18, Tuberous Sclerosis, Williams Syndrome, Wolf-Hirschorn, Other]
Childhood Cancer, National Cancer Institute
- Young People with Cancer: A Handbook for Parents
- Questions and Answers About Care for Children and Adolescents with Cancer, Cancer Facts
CancerSourceKids New
Youth Resources, NF

Youth with Health Conditions

Books for Youth on Genetic / Birth Conditions

Special-Needs Collection, a series books on disabilities and related topics, Woodbine House Publisher [ADD, Autism, Cerebral Palsy, Deafness, Down Syndrome, Epilepsy, Facial Difference, Learning Disabilities, Mental Retardation, Physical Disabilities, Siblings, Spanish Editions, Special Ed. & Reference, Spina Bifida, Tourette Syndrome, Visual Impairments]

Youth with family member with genetic / birth conditions

Living with a brother or sister with special needs: A book for sibs, 1996, D Meyer and P Vadasy, University of Washington Press, Seattle
Sibling/ family member information
Siblings Support Project, theArc, children with genetic / rare conditions (books, newsletters, videos, movies)
Views from Our Shoes: Growing up with a brother or sister with special needs, 1997 D Meyer (ed.), Woodbine House, Bethesda, Maryland

Genetics for kids

Genes and Genetics for Kids, Cooperative Research Centre for Discovery of Genes for Common Human Diseases (Gene CRC)
Understanding Genetic Testing, Science Behind the News
Understanding Heredity
What is a Genetic Disorder? What is a Diagnosis? How do Mutations Cause Genetic Diseases?, Genetic Learning Center, Salt Lake City, UT
WORD! Index, Kids Medical Dictionary, KidsHealth
Genetic Glossaries