Information for siblings and family members
of individuals with genetic conditions / rare conditions

Alphabetical list of genetic conditions / rare conditions

A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | R | S | T | U | V | W | X

Sibings (Brothers and Sisters)

• Sibling Support Project, TheArc, Children's Hospital and Regional Medical Center in Seattle, WA, includes Views from Our Shoes: Growing up with a Brother or Sister with Special Needs, brothers and sisters are too important to ignore, books, newsletters, videos)
• Kids with genetic conditions, Taryn's World

Other Family Members

• MUMS (Mothers United for Moral Support) - National Parent-to-Parent Network
• Parents Helping Parents - numerous resources
• Adult Sibling Grief
• Fathers Network
• GrandsPlace, grandparent resources

Books:

• 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]
• Human Genetics / Genome Book list, books on genetic conditions / birth defects
• Family Village Bookstore: reading, audio, video, and musical resources
• DMeyer and PVadasy (1996): Living with a Brother or Sister with Special Needs: A Book for Sibs
• DMeyer(1995): Uncommon Fathers: Reflections on raising a child with a disability, Woodbine House, or TheArc, ISBN 0-933149-68-9

Other web sites:

• National organizations
• International organizations
• Categories of conditions
• Clinics with a genetic counselor or clinical geneticist
• March of Dimes Fact sheets on birth defects and genetics, genetic counseling, and other related information from
• March of Dimes Resource Center - education materials, genetic condition fact sheets, pre-pregnancy information. Materials in English and Spanish.
• Office of Rare Diseases (ORD), National Institutes of Health
• Searching the Internet
• International languages sites

To locate a genetic counselor or clinical geneticist:

• Professional Genetics Societies
• Genetic clinics, centers, departments

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu

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