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/

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