Foundations and Internet Resources of Dermatologic Interest

A
ACNE
AcneNet
(Links to a variety of information for acne sufferers)
Web: www.derminfo-net.com/acnenet/toc.html
 
ALBINISM
National Organization for Albinism and Hypopigmentation (NOAH)
1530 Locust Street Box 29
Philadelphia, PA 19102
(215) 545-2322 (800) 473-2310
Web: www.albinism.org
Email: noah@albinism.org
 
ALOPECIA AREATA
National Alopecia Areata Foundation
710 C Street, Ste 11
San Raphael, CA 94901
(415) 456-4644 FAX: (415) 456-4274
Web: www.alopeciaareata.com
Email: naaf@compuserve.com
 
ANTHRAX
The Electronic Textbook of Dermatology
Web: http://telemedicine.org/BioWar/biologic.htm
 
 
AIDS
American Foundation for AIDS Research
733 3rd Avenue, 12th floor
New York, New York 10017
(212) 682-7440
 
National AIDS Hotline
Centers for Disease Control
English: 800-342-AIDS
24hrs./7 days weekly
 
Pediatric AIDS Foundation
1311 Colorado Avenue
Santa Monica, CA 90404
(310) 395-9051
FAX: (310) 395-5149
 
American Cancer Society
American Cancer Society
2200 Lake Blvd. NE
Atlanta, GA 30319
(800) 282-4914
Web: www.cancer.org
 
AMYLOIDOSIS
Sponsired by Boston Univ. School of Medicine
Web: http://medicine.bu.edu/amyloid/amyloid1.htm
 
ARTHRITIS (RHEUMATOID)
Arthritis Foundation
P.O. Box 1900
Atlanta, GA 30326
(404) 872-7100
Info Line: (800) 283-7800
Web: www.arthritis.org
 
ASA (American Skin Association)
American Skin Association
150 East 58th Street, 33rd Floor
New York, NY 10155-0002
(212) 753-8260 FAX: (212) 688-6547
Email: AmericanSkin@compuserve.com
 
ATAXIA-TELANGIECTASIA
Ataxia-Telangiectasia With Cancer
c/o Immunodeficiency-Cancer Registry
Box 609 Mayo
University of Minnesota
Minneapolis, MN 55455
 

B
 
BEHCET'S SYNDROME
American Behcet's Foundation
P.O. Box 54063
Minneapolis, MN 55454-0063
(800) 723-4238
Web: www.w2.com/behcets.html
 
BIRTHMARKS
Hemangioma and Vascular Birthmark Foundation
P.O. Box 106
Latham, NY 12110
(518) 782-9637
Web: www.birthmark.org
Email: hvbf@aol.com
Email: info@birthmark.org

 
C
 
CANCER
 
American Cancer Society
American Cancer Society
2200 Lake Blvd. NE
Atlanta, GA 30319
(800) 282-4914
Web: www.cancer.org
 
 
National Cancer Institute
National Cancer Institute
Office of Communications
National Institutes for Health
9000 Rockville Pike
Bldg 31, Room 10A31
Bethesda, MD 20892
(800) 4-CANCER
FAX (301) 402-4945
Web: www.nci.nih.gov
 
National Foundation for Cancer Research
National Foundation for Cancer Research
4600 East West Highway
Bethesda, MD 20814
800-321-CURE
Web: www.nfcr.org
 
CHICKEN POX and SHINGLES (Varicella and Zoster)
VZV Research Foundation
36 East 72nd Street
New York, NY 10021
(212) 472-3181
 
CUTANEOUS T-CELL LYMPHOMA (MYCOSIS FUNGOIDES)
CTCL-MF email support list:

To subscribe, send email to: listserv@home.ease.lsoft.com
In the body of the message, write: Subscribe CTCL-MF


D
 
DERMATOLOGY
(American Academy of Dermatology)
American Academy of Dermatology (AAD)
930 North Meacham Rd.
P.O. Box 4014
Schaumberg, IL 60168-4014
(847)-330-0230
Web: www.aad.org
 
(Dermatology Foundation)
Dermatology Foundation
1560 Sherman Ave., Ste. 870
Evanston, IL 60201
(847) 328-2256
Web: www.dermfnd.org
Email: dfgen@dermfnd.org
 
Derm-InfoNet
A resource for healthguides, literature and more about disorders of the skin, hair and nails.
Web: www.derm-infonet.com

DERMATOLOGIC SURGERY (American Society for Dermatologic Surgery)
American Society for Dermatologic Surgery
930 North Meacham Rd. P.O. Box 4014
Schaumberg, IL 60168-4014
(847) 330-0230
 
DERMATOPATHOLOGY
Dermatopathology Foundation
P.O. Box 377
Canton, MA 02021
(617) 821-0648
 
DERMATITIS HERPETIFORMIS
American Celiac Society
58 Musano Court
West Orange, NJ 07052
(973) 325-8837 FAX: (973) 669-8808
 
(Gluten Intolerance Group of N. America)
15110 Tenth Avenue, SW, Ste. A
Seattle, WA 98166-1820
(206) 246-6652 FAX: (206) 246- 6531
Web: www.gluten.net
 
DERMATOMYOSITIS
Myositis Association of America
755 Cantrell Ave., Suite C
Harrisonburg, VA 22801
Web: www.myositis.org
Email: maa@myositis.org
 
Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718
(800) 572-1717 FAX: (601) 529-5300
Web: www.mdausa.org
Email: mda@mdausa.org
 
DYSAUTONOMIA (Riley-Day Syndrome)
Dysautonomia Foundation, Inc.
20 East 46th Street, Suite 302
New York, NY 10017
(212) 949-6644
FAX: (212) 682-7625
 
DYSTROPHIC EPIDERMOLYSIS BULLOSA
Dystrophic Epidermolysis Bullosa
Research Association of America, Inc.
(D.E.B.R.A.)
40 Rector Street. 14th Floor, Ste. 1403
New York, New York 10006
(212) 513-4090 FAX: (212) 513-4099
Web: www.debra.org
Email: debraorg@erols.com
 

E
 
ECTODERMAL DYSPLASIA
National Foundation for Ectodermal Dyplasia
219 East Main St., P.O. Box 114
Mascoutah, IL 62258-0114
(618) 566-2020 FAX: (618) 566-4718
Web: www.nfed.org
Email: nfed@aol.com
 
ECZEMA
Eczema Association for Science & Education
1220 S.W. Morrison, Ste. 433
Portland, OR 97205
(503) 228-4430 FAX: (503) 224-3368
Web: www.eczema-assn.org
Email: NEASE@teleport.com
 
National Eczema Society
163 Eversholt Street
London NW1 1BU UNITED KINGDOM
(44) 71-388-4097 FAX: (44) 71-388-5882
Web: www.eczema.org
 
EHLERS-DANLOS SYNDROME
Ehlers Danlos Nat'l Foundation
P.O. Box 35177
Los Angeles, CA 90035
(323) 651-3038 FAX: (323) 651-1366
Web: www.ednf.org
Email: loosejoint@aol.com
 
EPIDERMO DYSPLASIA VERRUCIFORMIS
Epidermo Dysplasia Verruciformis
The Paul E. Keener Registry
Robert C. Byrd Health Sciences Cntr.
Box 9167
Morgantown, WV 26506-9167
(304) 293-2804 FAX: (304) 293-8824
 
EPIDERMOLYSIS BULLOSA
Dystrophic Epidermolysis Bullosa
Research Association of America, Inc.
(D.E.B.R.A.)
40 Rector Street. 14th Floor, Ste. 1403
New York, New York 10006
(212) 513-4090 FAX: (212) 513-4099
Web: www.debra.org
Email: debraorg@erols.com
 
National Epidermolysis Bullosa Registry
Clinical Coordinating Center
Univ. of North Carolina - Chapel Hill
Dept. of Dermatology
Room 137 - NCMH
Chapel Hill, NC 27514
(919) 966-3321 or 966-6383
Web: http://www.med.unc.edu/derm/nebr_site/index.htm
 
ERYTHEMA MULTIFORME
Stevens Johnsons Syndrome Foundation
9285 N. Utica Street
Westminster, CO 80030
(303) 635-1241 FAX: (303) 487-9359
Email: sjsupport@aol.com


H
 
Hereditary Disorders:
 
BLOOM'S SYNDROME REGISTRY
(Congenital telangiectatic erythema resembling LE)
Bloom's Syndrome Registry
c/o Laboratory of Human Genetics
The New York Blood Center
310 East 67th Street
New York, NY 10021
 
DYSAUTONOMIA (Riley-Day Syndrome)
Dysautonomia Foundation, Inc.
20 East 46th Street, Suite 302
New York, NY 10017
(212) 949-6644
FAX: (212) 682-7625
 
FANCONI'S ANEMIA INTERNAT'L REGISTRY
Fanconi's Anemia International Registry
c/o Dr. Arleen Auerbach
Laboratory for Investigative Dermatology
Rockefeller University
1230 York Avenue
New York, NY 10021
 
THE ALLIANCE OF GENETICS SUPPORT GROUPS
4301 Connecticut Avenue, NW, Suite 404
Washungton, DC 20008-2304
(202) 966-5557
Helpline: (800) 336-4363
FAX: (202) 966-8553
Web: www.geneticalliance.org
Email: info@geneticalliance.org
 

H
HAIR, SKIN and NAILS (Disorders of)
Web: www.derm-infonet.com
 
HANSEN'S DISEASE (Leprosy)
The World Health Organization sponsors this site.
Web: www.who.int/lep
 
HEMANGIOMA
Hemangioma and Vascular Birthmark Foundation
P.O. Box 106
Latham, NY 12110
(518) 782-9637
Web: www.birthmark.org
Email: hvbf@aol.com
Email: info@birthmark.org
 
HEMOCHROMATOSIS
Hemochromatosis Research Foundation
P.O. Box 8569
Albany, NY 12208
(518) 489-0972
FAX: (518) 489-0227
 
HERPES
Herpes Resource Center
Box 100
Palo Alto, CA 94302
(877) 411-HERPES
 
Herpes Resource Center / American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
(National Herpes Hotline) (919) 361-8488
Purchase info: (800) 230-6039
Web: www.ashastd.org
 
HERPES ZOSTER (Shingles)
VZV Research Foundation
40 East 72nd Street
New York, NY 10021
(212) 472-3181

HISTIOCYTOSIS
Histiocytosis Association of America, Inc.
302 N. Broadway
Pitman, NJ 08071
(800) 548-2758
 
HUMAN PAPILLOMAVIRUS
HPV Support program
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
(800) 22-8922
 

I
ICHTHYOSIS
 
Foundation for Ichthyosis & Related Skin Types (F.I.R.S.T.)
P.O. Box 669
Ardmore, PA 19003-0669
(800) 545-3286 or (610) 789-3995
FAX: (610) 789-4366
 
National Registry for Ichthyosis and Related Skin Types
Universty of Washington
Box 356524
Seattle, Washington 98195
(800) 595-1265 or (206) 616-3179
FAX: (206) 616-4302
 
INCONTINENTIA PIGMENTI
National Incontinentia Pigmenti Foundation
41 East 57th Street, 5th floor
New York, NY 10022
(212) 207-4636
Email: nipf@pipeline.com
 

K
 
KAPOSI'S SARCOMA
Kaposi's Sarcoma Research &
Education Foundation
470 Castro #207
San Francisco, CA 94929
 
KIDNEY-related
American Kidney Fund
6110 Executive Blvd., Ste 1010
Rockville, MD 20852
(800) 638-8299 or (301) 881-3052
Web: www.AKFINC.org
(Re: UV tx for uremic pruritus w/ dialysis)
 
American Assoc. of Kidney Pts. (AAKP)
100 South Ashley Drive, Ste. 280
Tampa, FL 33602
(800) 749-2257
FAX: (813) 223-0001
Web: www.aakp.org
(Re: uremic pruritis w/ dialysis)

 

National Kidney Foundation of GA
2951 Flowers Rd. S., Ste. 211
Atlanta, GA 30341
(800) 633-2339
FAX: (770) 452-7564
Web: www.nkfg.org
Email: cstarr@nkfg.org
Attn: Chris Starr
(Re: uremic pruritus w/ dialysis)

 


L
LEPROSY
Damien Dutton Society for Leprosy Aid
(DDSLA)
616 Bedford Avenue
Bellmore, NY 11710
(516) 221-5829
 
Gillis W. Long Hansen's Disease Center
5445 Point Clair Rd.
Carville, LA 70721
(504) 642-4700
FAX: (504) 642-4729
The World Health Organization sponsors this site.
Web: www.who.int/lep
 
LICE
See PEDICULOSIS
 

 

LUPUS
American Lupus Society
3941 Del Amo Blvd., Ste. 922
Torrance, CA 90503
(213) 542-8891 or (800) 331-9802
 
National Lupus Erythematosus Foundation
5430 Van Nuys Blvd. Suite 206
Van Nuys, CA 91404
(Atlanta Chapter)

Lupus Foundation of America
150 Interstate North Pkwy, NW
Atlanta, GA 30339-2203
707-571-8950

Lupus Foundation of America
1300 Piccard Dr., Ste 200
Rockville, Maryland 20850-4303
(301) 670-9292, (800) 558-0121
FAX: (301) 670-9486
Web: www.lupus.org
Email: lupusinfo@aol.com
 
LYMPHOMA
Cutaneous Lymphoma Network
Dept. of Dermatology
University of Cincinnati
P.O. Box 670523
Cincinnati, OH 45267
 
Other internet resources (may be cross referenced with cutaneous T-cell lymphoma or mycosis fungoides):

CUTANEOUS T-CELL LYMPHOMA (MYCOSIS FUNGOIDES)
CTCL-MF email support list:
To subscribe, send email to: listserv@home.ease.lsoft.com
In the body of the message, write: Subscribe CTCL-MF
 
Cure for Lymphoma Foundation
(212) 319-5857
Email: BFCFL@aol.com
 
ACOR (Assoc. of Cancer On-Line Resources)
Email: CTCL-MF@LISTSERV.ACOR.ORG
(200 members, 18 countries, No fees. Educational and emotional support.)
 
LYMPHOMATOID PAPULOSIS (and other Ki-1 positive cutaneous lymphomas)
Lymphomatoid Papulosis Central Registry
Dept. of Pathology
Beth Israel Hospital
330 Brookline Ave.
Boston, MA 02215
(617) 667-5886
FAX: (617) 667-4533
Email: mkadin@bidmc.harvard.edu

M
MARFAN'S SYNDROME
National Marfan Foundation
382 Main Street
Port Washington, NY 11050
(516) 883-8712
(800) - 8 - MARFAN
FAX (516) 883-8712
 
MASTOCYTOSIS
Web: www.mast.gil.com.au/
(An Australian site with good information)
 
The Mastocytosis Society, Inc.
11208 Vienna Drive
Denton, MD 21629
 
MELANOMA
American Melanom Foundation
Biologics Program USC Cancer Center
9500 Gilman Drive
P.O. Box 0658
La Jolla, CA 92093-0658
(619) 534-3840
 
See also: Skin Cancer
 
 
MYCOSIS FUNGOIDES
See also: Cutaneous T-Cell Lymphoma and Lymphoma
 

N
NAILS, SKIN and HAIR (Disorders of)
Web: www.derm-infonet.com
 
National Foundation for Cancer Research
National Foundation for Cancer Research
4600 East West Highway
Bethesda, MD 20814
800-321-CURE
Web: www.nfcr.org
 
NIH/National Institutes of Health
National Institutes of Health
9000 Rockville Pike
Bethesda, MD 20205
(301) 496-4000
 
NEUROFIBROMATOSIS
National Neurofibromatosis Foundation
95 Pine Street, 16th Floor
New York, NY 10005
(212) 344-6633 or (800) 323-7938

Neurofibromatosis Information
Web: http://nf.org
 
NEVI
Nevus Network - Congenital Nevus Support Group
P.O. Box 1981
Woodbridge, VA 22193
(703) 492-0253
FAX: (405) 377-3403
Web: www.nevusnetwork.org
Email: nevusnet@bigfoot.com
 
Nevus Outreach, Inc.
1616 Alpha Street
Lansing, MI 48910
(517) 487-2306
Web: www.nevus.org
Email: info@nevus.org
 
NORD (National Organization for Rare Disorders)
P.O. Box 8923
New Fairfield, CT 06812-8923
Web: www.rarediseases.org
 

O
OSTOMY
National Ostomy Foundation
19772 MacArthur Boulevard, Ste. 200
Irvine, CA 92612-2405
(714) 660-8624 or (800) 826-0826
FAX: (714) 660-9262
Web: www.uoa.org
Email: uoa@deltanet.com
 

P
PAGET'S DISEASE FOUNDATION
The Paget's Disease Foundation
165 Cadman Plaza East
Brooklyn, NY 11201
 
PEDICULOSIS (Lice)
National Pediculosis Association
P.O. Box 149
Newton, MA 02161
(617) 449-6487
 
PEMPHIGUS
National Pemphigus Foundation
828 San Pablo Avenue, Suite 203
Albany, CA
(510) 527-4970 FAX: (510) 527-8497
Web: www.pemphigus.org
Email: PVnews@aol.com
 
PORPHYRIA
American Porphyria Foundation
P.O. Boc 22712
Houston, Texas 77227
(713) 226-9617 FAX: (713) 871-1788
Web: www.enterprise.net/apf/
Email: porphyrus@juno.com
 
PORT WINE STAIN
National Congenital Port Wine Stain Foundation
125 East 63rd Street
New York, NY 10021
(516) 867-5137
FAX: (516) 869-1278
 
POST HERPETIC NEURALGIA
VZV Reasearch Foundation
36 East 72nd Street (PHN)
New York, NY 10021
(121) 472-3181
 
PSEUDOFOLLICULITIS BARBAE
Pseudofolliculitis Barbae Project
1875 Connecticut Avenue, Suite 1140
Washington, DC 20009
(202) 588-5300
 
Pseudofolliculitis Barbae Sufferers of America, Inc.
P.O. Box 3761
Port Arthur, TX 77643
(409) 982-2206
FAX: (409) 983-2103
Web: www.pernet.net/~pfb
 
PSEUDOXANTHOMA ELASTICUM (PXE)
National Association for Pseudoxanthoma Elasticum
3500 East 12th Avenue
Denver, CO 80206
(303) 355-3866
FAX: (303) 355-3859
Web: www.napenet.org
Email: nape@napenet.org
 
PXE International, Inc.
23 Mountain Street
Sharon, MA 02067-2234
(781) 784-3817
FAX: (781) 784-3817
Web: www.pxe.org
Email: pxe@tiac.net
 
 
PSORIASIS
National Psoriasis Foundation
6600 SW 92nd Ave.
Portland, OR 97223-7195
(503) 244-7404 FAX: (503) 245-0626
Web: www.psoriasis.org
Email: getinfo@npfusa.org
 
Psoriasis Research Institute
600 Town and Country Village
Palo Alto, CA 94301
(415) 326-1848 FAX: (415) 326-1262

Westwood-Squibb Pharmaceuticals
Web: www.westwood-squibb.com
 

R
(Rare Disorders) NORD (National Organization for Rare Disorders)
P.O. Box 8923
New Fairfield, CT 06812-8923
(203) 746-6518 or (800) 999-6673
Web: www.rarediseases.org
 
(Research) National Foundation for Cancer Research
National Foundation for Cancer Research
4600 East West Highway
Bethesda, MD 20814
800-321-CURE
Web: www.nfcr.org
 
ROSACEA
National Rosacea Society
800 South Northwest Highway, Ste. 200
Barrington, IL. 60010
(847) 382-8971 or (888) NO BLUSH
FAX: (847) 382-5567
Web: www.rosacea.org
Email: rosacea@aol.com
 

S
SARCOIDOSIS
National Sarcoidosis Resource Center
P.O. Box 1593
Piscataway, NJ 08855-1593
(732) 699-0733
FAX: (732) 699-0882
Web: www.nsrc-global.net
Email: sandra@nsrc-global.net
 
SarcoidCenter.com
Web: www.sarcoidcenter.com
Email: sarcoid@sarcoidcenter.com
 
Mount Sinai School of Medicine
Sarcoid Support Group Link(s)
Web: www.mssm.edu/medicine/pulmonary/support.html
 
SCLERODERMA
United Scleroderma Foundation
89 Newberry Street, Suite 201
Danvers, Massachusetts 01923-1075
(800) 722-HOPE (4673)
FAX: (978) 750-9902
Web: www.scleroderma.com
Email: sfinfo@scleroderma.com

Scleroderma Research Foundation
Pueblo Medical Commons
2320 Bath St., Ste. 315
Santa Barbara, CA 93105
(805) 563-9133 FAX: (805) 563-2402
Web: www.srfcure.org
Email: srfcure@srfcure.org

Scleroderma Info Exchange
150 Hines Farm Rd.
Cranston, RI 02921
(401) 943-3909
 
Scleroderma Support
(A patient site.)
Web: www.sclerodermasupport.com
 
SHINGLES (HERPES ZOSTER)
VZV Research Foundation
40 East 72nd Street
New York, NY 10021
(212) 472-3181
 
SJOGREN'S SYNDROME
National Sjogren's Syndrome Association
5815 North Black Canyon Highway, Ste. 103
Phoenix, AZ 85015-2200
(602) 433-9844
FAX: (602) 433-9838
Web: www.sjogrens.com
Email: nssa@aol.com
 
Sjogren's Syndrome Foundation, Inc.
333 N. Broadway, Ste. 2000
Jericho, NY 11753
(516) 933-6365
FAX: (516) 933-6368
or (800) 4-SJOGRENS or (800) 475-6473
Web: www.sjogrens.com
 
SKIN CANCER
Skin Cancer Foundation
245 5th Avenue, Suite 1403
New York, NY 10016
(212) 725-5176
FAX: (212) 725-5751
Web: www.skincancer.org
Email: info@skincancer.org
 
American Melanoma Foundation
Biologics Program USC Cancer Center
9500 Gilman Drive
P.O. Box 0658
La Jolla, CA 92093-0658
(619) 534-3840
 
Nevoid Basal Cell Carcinoma Syndrome Support Network
162 Clover Hill Court
Marlboro, MA 01752
(508) 485-4873
FAX: (508) 481-4072

Memorial Sloan-Kettering Cancer Center
(New York City hospital with an extensive collection on skin cancer.)
www.mskcc.org
 
Skin Cancer Zone
Tips on protection from the sun's rays and daily UV indexes.
Web: www.skin-cancer.com
 
Skin Cancer News
Follow the AAD homepage link to "Skin Cancer Updates".
This site has "Safe Sun Tips" and links to skin cancer news.
Web: www.aad.org
 
SKIN, HAIR and NAILS (Disorders of)
Web: www.derm-infonet.com
 
STEVENS JOHNSONS SYNDROME FOUNDATION (Erythema Multiforme)
9285 N. Utica St.
Westminster, CO 80030
(303) 635-1241 or FAX (303) 487-9359
Email: sjsupport@aol.com

STURGE-WEBER SYNDROME
Sturge-Weber Foundation
P.O. Box 418
Mt. Freedom, NJ 07970
(973) 895-4445 or (800) 627-5482
Email: SWF@pobox.com
 
 

T
 
T.E.N. (Toxic Epidermal Necrolysis)
Refer to "Stevens Johnsons Syndrome Foundation"
9285 N. Utica St.
Westminster, CO 80030
(303) 635-1241 or FAX (303) 487-9359
Email: sjsupport@aol.com
 
TUBEROUS SCLEROSIS
National Tuberous Sclerosis Association
8181 Professional Place, Ste. 110
Landover, MD 20785-2226
(800) 225-6872 or (301) 459-9888
FAX: (301) 459-0394
Web: www.ntsa.org
Email: vicky.whittemore@ntsa.org
 

V
 
VITILIGO
National Vitiligo Foundation
611 South Fleishel Ave.
Tyler, Texas 75711
903-531-0074 FAX (903) 525-1234
Web: www.vitiligofoundation.org
Email: vitiligo@trimofran.org
 
National Organization for Albinism ad Hypopigmentation
1530 Locust Street Box 29
Philadelphia, PA 19102
(215) 545-2322 (800) 473-2310
Web: www.albinism.org
Email: noah@albinism.org
 
VENEREAL DISEASE
American Social Health Association
(ASHA) (VENEREAL DISEASE)
P.O. Box 13827
Research Triangle Park, NC 27709
(800) 783-9877
Web: www.ashastd.org
Teen website: www.iwannaknow.org
 
VULVODYNIA
National Vulvodynia Foundation
P.O. Box 4491
Silver Spring, MD 20914-4491
(301) 299-0775
FAX: (301) 299-3999
Email: matenva@graphcom.com"
 
 

X
 
XERODERMA PIGMENTOSUM
Xeroderma Pigmentosum Registry
c/o Dr. W. Clark Lambert
UMDNJ - New Jersey Medical School
185 South Orange Avenue
Newark, NJ 07103
(973) 456-4405
 
Xeroderma Pigmentosum Society
P.O. Box 4759
Poughkeepsie, NY 12601
(914) 473-4735
Web: www.xps.org
Email: xps@xps.org
 
 

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