Phelan-mcdermid syndrome
Organizations
Are there any support groups for Phelan-McDermid syndrome?
Social networking/family support groups for Phelan-McDermid syndrome are below:
- Phelan-McDermid Syndrome Foundation
200 Capri Isles Blvd
Suite 7F
Venice, FL 34284
Phone: (941) 485-8000
Email: info@22q13.org
Website: www.22q13.org
- Chromosome Disorder Outreach, Inc.
P.O. Box 724
Boca Raton, FL 33429-0724 USA
Phone: (561) 395-4252
Email: info@chromodisorder.org
Website: www.chromodisorder.org
- Chromosome 22 Central
c/o Murney Rinholm
7108 Partinwood Drive
Fuquay-Varina, NC 27526 USA
Phone: (919) 567-8167
Email: murney.rinholm@c22c.org
Website: www.c22c.org
- UNIQUE - Rare Chromosome Disorder Support Group
G1 The Stables
Station Road West
Oxted, RH8 9EE United Kingdom
Phone: 004401883723356
Email: info@rarechromo.org
Website: http://www.rarechromo.org/html/home.asp
Pamphlet specifically for Phelan-McDermid Syndrome:
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: (301) 251-4925
Toll-free: (888) 205-2311
Website: rarediseases.info.nih.gov/GARD/