www.firstskinfoundation.org/ firstname.lastname@example.org Other Contact Information
2616 North Broad Street
Colmar, PA 18915
1-800-545-3286 (Voice - Toll-free) 215-997-9400 (Voice) 215-997-9403 (FAX) Description
The Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) is a nonprofit organization supported by public contributions and membership fees. FIRST raises funds to promote research on ichthyosis, a rare genetic skin disease, provide advice, guidance, and support among those affected; and distribute educational material to the public and medical professionals. The Foundation uses its national network of volunteers to bring self-help and educational support to individual members and their families. FIRST sponsors national and regional meetings and conferences, which feature leading researchers and clinicians and allow individuals with Ichthyosis to meet each other.
Serial publication: Ichthyosis Focus (newsletter), quarterly--news about ichthyosis activities, research, support, and planning. Additional publications include: Ichthyosis--An Overview (booklet); Ichthyosis--The Genetics of Its Inheritance (booklet); Handbook for New Parents (book); and Handbook for Teachers (book).Resource fact sheets,Video-"Release the Butterfly", "Living with Ichthyosis: A Teenage Perspective."
Tuesday, May 17, 2011