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Limb anomalies

Missing arm(s) or leg(s), Poland anomaly, Proximal Femoral Focal Deficiency, Holt Oram Syndrome, ectrodactyly, Proteus Syndrome, Sturge Weber Syndrome, Epidermolysis Bullosa, Nail Patella Syndrome, VATER Association, Arthrogryposis (amyoplasia), Cornelia de Lange Syndrome, other

60 Clyde Street
Newton, MA 02460-2250
Phone:  1-888-467-8481
Contact: Peter McLoughlin
Web site:
Cherub, Inc. (Association of Families and Friends of Children with Limb Disorders)
Children's Hospital of Buffalo
936 Delaware Ave
Buffalo, NY 14209
Phone: (716) 762-9997 or (716) 878-1050
Contact: Sandra Richenberg or Kathy Gura
Proximal Femoral Focal Deficiency
Virtual Support Group, Ohio
Contact: Mike and Cindy Malloy
Web site:
REACH (Association for Children with Hand or Arm Deficiency)
12 Wilson Way
Earl's Barton, Northamptonshire
United Kingdom, NN6 9NZ
Fax/Tel: 01604 811041
Holt Oram Syndrome Support Group
21 Forth Road, Redcar
Cleveland, TS10 1PN, United Kingdom
Phone: 01624 485379
see also, congenital heart defects

Holt Oram (from Online Mendelian Inheritance in Man, OMIM):

Holt Oram:

Future site of Holt Oram web page:
The Arthrogryposis Group
1 The Oaks, Common Mead Lane
Gillingham, Dorset, SP8 4SW, United Kingdom
Phone/Fax: 01747 822655

Other Resources:

Families with Amputee Children
P.O. Box 91834
Longbeach, CA 90804
(213) 828-4009

Single Shoes and Gloves:

Amputee Shoe and Glove Exchange
1635 Harwickshire Drive
Houston, TX 77077
National Odd Shoe Exchange
7102 N. 35th Ave., Suite 2
Phoenix, AZ 85051
(602) 841-6691
One Shoe Crew
86 Clavela Avenue
Sacramento, CA 95828-4647
(916) 364-7463

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Also See:

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

Link that takes you to the Genetic Support Groups  Link that takes you to the Genetic Professional Home Page  Link that takes you to the Genetics Education Center Home

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


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