Here are some recommended Support Groups and Foundations

Basal Cell Carcinoma Nevus Syndrome Life Support Network
For more general information about the syndrome, click here.
440.834.0011
www.bccns.org
info@bccns.org

Cicatricial Alopecia Research Foundation
310-801-3450
carfintl.org
info@carfintl.org

Cutaneous Lymphoma Foundation
clfoundation.org
To join the mailing list, click here.
248-644-9014
Or contact us via email

Foundation for Ichthyosis & Related Skin Types
firstskinfoundation.org
Contact us here.

International Topical Steroid Awareness Network
itsan.org
Contact us here

Lupus Foundation of America      
lupus.org                   
Main: 202.349.1155 (8:30 a.m. – 5:00 p.m. M-F Eastern Time)
Information request line: English / Para informacíon en español 1.800.558.0121
Email: info@lupus.org

National Foundation for Ectodermal Dysplasias
nfed.org
Request more information here.

National Alopecia Areata Foundation           
NAAF.org
Phone: 415.472.3780
Email: info@naaf.org

National Eczema Association
nationaleczema.org
Contact us here.

National Psoriasis Foundation             
503-244-7404 or 800-723-9166
psoriasis.org
Email: getinfo@psoriasis.org

National Rosacea Society        
rosacea.org              
1-800-NO-BLUSH
Email: rosaceas@aol.com

National Vitiligo Foundation INC             
nvfi.org
513-793-NVFI (6834)
Email:      info@nvfi.org

Nevus Outreach
nevus.org
877-426-3887
Contact us here.

Pachyonychia Congenita Project
pachyonychia.org
Contact us here
info@pachyonychia.org

Pemphigus Foundation
pemphigus.org
info@pemphigus.org
855-473-6744
916-922-1298

Skin Cancer Foundation     
skincancer.org 
212-725-5176
Email: info@skincancer.org

Sturge Weber Foundation
sturge-weber.org
800-627-5482
swf@sturge-weber.org

Vitiligo Support International
vitiligosupport.org
434-326-5380
Contact us here

XP Family Support Group – Xeroderma Pigmentosum
www.xpfamilysupport.org
916-628-3814