Coalition of Skin Diseases

Mission

The mission of the Coalition of Skin Diseases (CSD) is to advocate on behalf of individuals with skin disease. This is accomplished by:

  • supporting basic science and clinical research,
  • fostering physician and patient education,
  • generating awareness of skin disease,
  • supporting the growth of member organizations through the sharing of mutual concerns that might increase the pace of discovery of a cure while improving the quality of life for those affected.

The CSD also works closely with the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to coordinate research efforts for all skin diseases. Members of the coalition meet annually with members of Congress and testify when selected before the appropriations committees to educate Congress and the public about the seriousness of skin diseases while stressing the need for increased medical funding.

Visit the CSD Web Site

Contact the Office

Coalition of Skin Diseases
4301 Connecticut Avenue, NW
Suite 404
Washington, D.C. 20008-2369
Telephone: (202) 243-0115

CSD Members

Basal Cell Carcinoma Nevus Syndrome/Gorlin Syndrome
BCCNS Life Support Network
Kristi Schmitt Burr, Executive Director
P. O. Box 321
Burton, OH 44021
Tel: (440) 834-0011
Fax: (440) 834-0132
E-mail: info@bccns.org
Web: www.bccns.org

Cicatricial Alopecia Research Foundation
CARF
Sheila Belkin, CEO
P. O. Box 64158
Los Angeles, CA 90064
Tel: (310) 475-2419
Fax: (310) 475-4883
E-mail: sbelkin@roadrunner.com
Web: www.carfinti.org

Cutaneous Lymphoma Foundation
Gary H. Ross, Executive Director
P. O. Box 374
Birmingham, MI 48012
Tel: (248) 644-9014
Fax: (248) 644-9014
E-mail: info@clfoundation.org
Web: www.clfoundation.org

Dystrophic Epidermolysis Bullosa
DebRA of America Inc.
Abby Meadows, Development Manager
16 East 41st St
3rd floor
New York, NY 10017
Tel: (212) 868-1573
Fax: (212) 868-9296
E-mail: staff@debra.org
Web: www.debra.org

Ehlers Danlos National Foundation
EDNF
Cynthia Lauren, Executive Director
3200 Wilshire Blvd., Suite 1601, South Tower
Los Angeles, CA 90010
Tel: (213) 368-3800
Fax: (213) 427-0057
E-mail: clauren@ednf.org
Web: www.ednf.org

Foundation for Ichthyosis and Related Skin Types
F.I.R.S.T.
Jean Pickford, Executive Director
1364 Welsh Road, G2
North Wales, PA 19454
Tel: (215) 619-0670
Fax: (215) 619-0780
E-mail: info@scalyskin.org
Web: www.scalyskin.org

Hidradenitis Suppurativa Foundation Inc.
Michelle Barlow, Executive Director and CEO
7895 Via Belfiore #4
San Diego, CA 92129
E-mail: info@hs-foundation.org
Web: www.hs-foundation.org

Inflammatory Skin Disease Institute ISDI
LaDonna Williams, Director
PO Box 1074
Newport News, VA 23601
Tel: (757) 223-0795
Fax: (757).595-1842
E-mail: LaDonna.Williams@isdionline.org
Web: www.isdionline.org

International Pemphigus Pemphigoid Foundation
IPPF
Janet Segall, Interim Executive Director
2701 Cottage Way, Suite 16
Sacramento, CA 95825
Tel: (916) 922-1298
Fax: (510) 527-8497
E-mail: jsegall@pemphigus.org
Web: www.pemphigus.org

National Alopecia Areata Foundation
NAAF
Vicki Kalabokes, Executive Director
14 Mitchell Blvd.
San Rafael, CA 94903-1953
Tel: (415) 472-3780
Fax: (415) 472-5343
E-mail: info@naaf.org
Web: www.naaf.org

National Eczema Association
NEA
Vicki Kalabokes, CEO
4460 Redwood Hwy., Suite 16D
San Rafael, CA 94903
Tel: (415) 499-3474
Fax: (415) 472-5345
E-mail: info@nationaleczema.org
Web: www.nationaleczema.org
CSD Representative: Irene Crosby
(NEA Volunteer Patient Advocate)

National Foundation for Ectodermal Dysplasias
NFED
Malinda Heuring, Director of Education
PO Box 114
Mascoutah, IL 62258
Tel: (618) 566-2020
Fax: (618) 566-4718
E-mail: info@nfed.org
Web: www.nfed.org

National Psoriasis Foundation
Pam Field, President and CEO
6600 S.W. 92nd Ave., Suite 300
Portland, OR 97223-7195
Tel: (503) 546-8366
Fax: (503) 245-0626
E-mail: getinfo@psoriasis.org
Web: www.psoriasis.org

National Vitiligo Foundation
Robert D. Haas, Executive Director
76 Garden Rd.
Columbus, OH 43214
PHONE: (614) 261-8145 (9 a.m. - 4 p.m. EST)
Fax: (614) 261-8245
E-mail: rhaas@nvfi.org
Web: www.nvfi.org

Pachyonychia Congenita Project
Mary Schwartz, Director
2386 E. Heritage Way, Suite B
Salt Lake City, UT 84109
Tel: (877) 628-7300
Fax: (877) 628-7399
E-mail: Mary.Schwartz@pachyonchia.org
Web: www.pachyonychia.org

The Sturge-Weber Foundation
Karen Ball, President and CEO
P. O. Box 418
Mt. Freedom, NJ 07970
Tel: (973) 895-4445
Fax: (973) 895-4846
E-mail: kball@sturge-weber.org
Web: www.sturge-weber.org

Vitiligo Support International
Jackie Gardner, Executive Director

West Coast Office:
P. O. Box 4008, Valley Village, CA 91617-0008
Tel: (818) 752-9002
Fax: (818) 337-7268

East Coast Office:
808 D Wiggington Road

Lynchburg, VA 24502
Tel: (818) 752-9002
Fax: (540) 301-1551
E-mail: info@vitiligosupport.org
Web: www.vitiligosupport.org

American Skin Association, Inc.
346 Park Avenue South, 4th Floor
New York, NY 10010
Tel: (212) 889-4858
Fax: (212) 889-4959
E-mail: info@americanskin.org
Web: www.americanskin.org


Additional Patient Advocacy Groups

American Skin Association Inc.

American Skin Association
346 Park Avenue South, 4th Floor
New York, NY 10010
Tel: (212) 889-4858
Fax: (212) 889-4959
E-mail: info@americanskin.org
Web: www.americanskin.org

Dermatitis Herpetiformis

Gluten Intolerance Group
15110 10th Avenue SW, Suite A
Seattle, WA 98166
Tel: (206) 246-6652
Fax: (206) 246-6531
E-mail: info@gluten.net
Web: www.gluten.net

Hemangioma

National Organization of Vascular Anomalies
8711-104 6 Forks Road PMG 126
Raleigh, NC 27615
Tel: (419) 425-1589
Fax: (419) 425-1589
E-mail: admin@mail.novanews.org
Web: www.novanews.org

Marfan Syndrome

National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
Tel: (516) 883-8712
Fax: (516) 883-8040
E-mail: jgrima@marfan.org
Web: www.marfan.org

National Association for Pseudoxanthoma Elasticum Inc

NAPE IN
8760 Manchester Rd.
St. Louis, MO 63144-2724
Tel: (314) 962-0100
Fax: (314) 962-0100
E-mail: NapeStLouis@sbcglobal.net
Web: www.pxenape.org

Pseudoxanthoma Elasticum

PXE International Inc.
4301 Connecticut Ave., NW-Suite 404
Washington, DC 20008
Tel: (202) 362-9599
Fax: (202) 966-8553
E-mail: info@pxe.org
Web: www.pxe.org

Xeroderma Pigmentosum

Xeroderma Pigmentosum Society
437 Snydertown Road
Craryville, NY 12521
Tel: (518) 851-2612
Fax: (518) 851-2612
E-mail: xps@xps.org
Web: www.xps.org