Links

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 president@4p-supportgroup.org.

Related Support Groups

Australia Wolf-Hirschhorn Syndrome Support Group
United Kingdom WHST Support Group
Spain Asociación Española del Síndrome de Wolf-Hirschhorn (AESWH)
Italy
Italian Association for the Wolf-Hirschhorn Syndrome (AISiWH)
Germany WHS Support Group (mostly in German at this time)
France WHS Support Group (in French)
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.
The MIM Gene map for Chromosome 4 is available from the National Institutes of Health.
The Genome Database provides a selection of Chromosome 4 maps and information.
Gnome info has recent information about WHS.

WHS Information Sites

Gene Reviews article by Agatino Battaglia, MD, John C Carey, MD, and Tracy J Wright, PhD. A dynamically updated review of WHS. A very valuable resource for WHS information.
The Family Village web site at the University of Wisconsin has a page for WHS, and also is a good resource for other disability related information.
IBIS (International Birth Defects Information Systems) 4p- information
Look at Photos of WHS.
Medscape (free Medline searching)

Other Medical Sites and Related Issues

Wrightslaw accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
PubMed Retrieval System An online database of citations from medical journals. PubMed is a service of the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM).
The Rare Genetic Diseases in Children site is hosted by the NYU Medical Center.
The UniGene (Unique Gene Sequence Collection) has information available on all chromosomes in addition to Chromosome 4.
AMA Physician Select
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.
Center for Assistive Technology (CAT)
Children’s Feeding Network
Cleft Net Cleft Lip and Cleft Palate Support
The Council for Disability Rights
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
National Fathers Network
National Special Needs Network (Ins., Trusts, Wills, etc.)
National Organization of Rare Diseases (NORD)
Parenting Special Needs
Sensory Processing Disorder Netwrok
Sign Language
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)

Bella’s Beds

http://www.waterwaybabies.com/

http://www.taylorbar.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://siblingsupport.org/

http://www.ehsnrc.org/

http://www.zerotothree.org/

http://www.high-speed-internet-access-guide.com/articles/web-accessibility.html

Wolfhirschhorn.org

www.theresaliononthedancefloor.com

http://www.lanceamusjones.com

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