Clouston syndrome

Organizations

Are there any support groups for Clouston Syndrome?

There are support groups for Clouston syndrome. Some of these groups are specific for Clouston syndrome, and others are groups for certain features of this condition. Support groups include the following:

National Foundation for Ectodermal Dysplasias

6 Executive Drive, Suite 2

Fairview Hights, IL 62208, USA

Phone: (618) 566-2020

Email: info@nfed.org

Website: http://www.nfed.org

Ectodermal Dysplasia Society

Unit 1 Maida Vale Business Centre

Leckhampton, England

GL53 7ER, United Kingdom

Phone: 4401242261332

Toll-free: 4407805775703

Email: diana@ectodermaldysplasia.org

Website: http://www.ectodermaldysplasia.org

Ectodermal Dysplasias International Registry

National Foundation for Ectodermal Dysplasias

410 East Main Street

Mascoutah IL 62258

Phone: 618-566-2020

Fax: 618-566-4718

Email: info@nfed.org

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Phone: (301) 251-4925

Toll-free: (888) 205-2311

Website: http://rarediseases.info.nih.gov/GARD/

March of Dimes

1275 Mamaroneck Avenue

White Plains, NY 10605

Phone: (914) 997-4488

Email: AskUs@marchofdimes.org or preguntas@nacersano.org

Website: http://www.marchofdimes.org and nacersano.org

Locks of Love

234 Southern Blvd.

West Palm Beach, FL 33405-3099

Phone: (561) 833-7332

Toll-free: (888) 896-1588

Email: info@locksoflove.org

Website: http://www.locksoflove.org

References
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Where do I find other people with Clouston Syndrome

Where do I find other people with Clouston Syndrome

Support groups for Clouston syndrome and groups for certain features of the condition can be great places to find other people with the condition. Some of these groups include:

National Foundation for Ectodermal Dysplasias

6 Executive Drive, Suite 2

Fairview Hights, IL 62208, USA

Phone: (618) 566-2020

Email: info@nfed.org

Website: http://www.nfed.org

Ectodermal Dysplasia Society

Unit 1 Maida Vale Business Centre

Leckhampton, England

GL53 7ER, United Kingdom

Phone: 4401242261332

Toll-free: 4407805775703

Email: diana@ectodermaldysplasia.org

Website: http://www.ectodermaldysplasia.org

Ectodermal Dysplasias International Registry

National Foundation for Ectodermal Dysplasias

410 East Main Street

Mascoutah IL 62258

Phone: 618-566-2020

Fax: 618-566-4718

Email: info@nfed.org

References

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