Note that this page contains links that will direct you to URLs outside the 4p- Support Group site. 4p- Support Group does not control the content or relevancy of these pages. The listing of these external sites does not constitute an endorsement of these sites by 4p- Support Group. They are provided as a courtesy to our members because these sites have information about Wolf-Hirschhorn Syndrome, Chromosome 4 itself, or additional considerations of interest to our members.
If you know of additional sites or find that the links are broken or have moved, please e-mail sylvia@4p-supportgroup.org
Related Support Groups
United Kingdom WHST Support Group
Spain Asociación Española del Síndrome de Wolf-Hirschhorn (AESWH)
Italy Italian Association for the Wolf-Hirschhorn Syndrome (AISiWH)
S.O.F.T. Support Organization for Trisomy 18, 13 and Related Disorders
About Face is a non-profit organization dedicated to providing information, emotional support, and educational programs to individuals who have a facial disfigurement, and to their families.
Chromosome Deletion Outreach, Inc. provides information & support for Families and Professionals affected by Chromosome Deletions, Trisomies, Inversions, Translocations and Rings.
The Genetic Alliance is an international coalition of genetic disorders support groups.
UNIQUE Rare Chromosome Disorder Support Group
Genome Maps
WOLF-HIRSCHHORN SYNDROME; WHS OMIM (Online Mendelian Inheritance in Man) has technical description and history of research on WHS. A great resource that complements the Gene Reviews article by Dr. Carey et al. below.
Other Medical Sites and Related Issues
IBIS (International Birth Defects Information Systems) 4p- information
Look at Photos of WHS.
Medscape (free Medline searching)
Association for Persons with Severe Handicaps (TASH)
American Academy of Pediatrics
American Speech & Hearing Association (ASHA)
Kennedy Krieger Institute at Johns Hopkins University in Baltimore MD provides comprehensive resources for children with disabilities. Children’s Feeding Network
https://acpa-cpf.org/ Cleft Lip and Cleft Palate Support
https://ncd.gov/resources
Epilepsy Foundation
Exceptional Parent Magazine
Wrightslaw – special education law, education law, and advocacy for children with disabilities
Latex Allergy Links
Learning Disabilities Association of America
https://www.fatherhood.gov/sites/default/files/resource_files/e000004142.pdf
National Special Needs Network (Ins., Trusts, Wills, etc.)
National Organization of Rare Diseases (NORD)
Parenting Special Needs
Sensory Processing Disorder Netwrok
Sign Language
https://wish.org/
Special Child Magazine
Sunshine Foundation (Wish Granting Organization)
Trach Ties tracheostomy info
Mobility Opportunities Via Education (MOVE) was designed to meet the needs of students with severe physical disabilities in the public school system.
Special Needs Products Companies
Finding Camps for Special Needs
Special Needs Kids Camps
Cascade Orthotics
Collis Curve Toothbrush
Therapy Shoppe OT Supplies
Abilitations OT Supplies
Rifton Products
Kid Power
Kid Speech
Don Johnston (assistive technology)
Abilities Expo
Enabling Devices (Toys for special children)
Convaid (Special needs wheel chairs/strollers)
Maclaren Strollers
Baby Jogger
Blue Sky Cycle Cart
Island Dolphin Care (Assisted therapy, therapeutic swimming)
http://www.waterwaybabies.com/
Gracie’s Gowns (Homemade hospital gowns for children battling illnesses throughout the United States)
Other Useful Sites
http://www.earlyinterventionsupport.com/resources/links/state.aspx
http://www.high-speed-internet-access-guide.com/articles/web-accessibility.html