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

• Bearable Times Kids & Teens Club
• Dreamsurfer Network: kids can get together and talk
• KidsHealth for Kids
• KidsHealth for Teens
• Starbright Foundation: kids who are in the hospital

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  

Also See:

• National organizations information on genetic conditions or birth defect

To locate a genetic counselor or clinical geneticist in your area:

• Professional Genetics Societies
• Genetic clinics, centers, departments

   

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Genetics Education Center
University of Kansas Medical Center © 1995-2008
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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