Foundation for Ichthyosis and Related Skin Types, Inc. Disease Support Organization Last Updated: Jun 11, 2019 03:14:13 pm Brochure Established: 1981 Area Served: United States The Foundation's mission is to improve lives and seek cures for those affected by ichthyosis and related skin types. Website: http://www.firstskinfoundation.org Diseases Supported Chanarin-Dorfman Syndrome • CHILD Syndrome • Congenital Ichthyosiform Erythroderma • Darier Disease • Erythrokeratodermia variabilis • Harlequin Ichthyosis • Ichthyosis • Ichthyosis hystrix, Curth Macklin type • Ichthyosis vulgaris • KID syndrome • Netherton syndrome • Pachyonychia Congenita • Refsum disease • Sjogren-Larsson syndrome • Trichothiodystrophy (TTD) • X-linked ichthyosis • Autosomal recessive congenital ichthyosis, NIPAL4-related • Epidermal nevus • Ichthyosis, cyclic, with epidermolytic hyperkeratosis • Ichthyosis, hystrix-like, with deafness • Lamellar ichthyosis • Conradi-Hünermann Show All 22Show Less 2616 N. Broad Street Colmar, Pennsylvania 18915 United States 1-800-545-3286215-997-9400 firstname.lastname@example.org 1 address 1 contact Show All Connect: Staff Speaks: English Telephone Translation: No (Translation services available for other languages) Our Organization Incorporated Nonprofit National Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff Our Financials N/A Funding for Services $800,000 Annual Budget $225,000 Funding for Research Funding Sources: PublicPrivateDonations This organization receives funding from a company that produces a test or treatment for the condition it serves: No If yes, % of funding from such companies? Our Membership 8,000 Membership Size 1 # of Chapters 20,000 Total Number on Mailing List 3,000 People with Conditions in Your Mailing List What We Do Support & Peer Matching Referrals to Matching Individuals/Families Peer Support Peer-to-peer Counseling Referrals to Local Chapter or Group Patient Navigators Translation Services Therapy & Counseling Professional Counseling Crisis Intervention Grief Counseling Medical Referrals Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic Counseling Legal Advice Workplace Issues Malpractice Help with Adoption or Placement Financial Assistance Medical Care Transportation Assistive devices Insurance Scholarships Home Modifications Research Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample Storage Education & Training Telephone Helpline E-mail List Training Speakers Bureau Advocacy Training Other Pen pal Program Summer Camp Upcoming Events Conference: National Conference When:Jun 26, 2020 08:30 AM (UTC -5:00 US EST). Ends on Jun 28, 2020. Multi-day event. Where:801 Greenwich Ave Warwick, RI , Warwick, Rhode Island 02886 Members of FIRST come from all over the world to attend this three-day event. FIRST provides lectures by leading physicians about ichthyosis, open discussion groups and child care activities. URL: http://www.firstskinfoundation.org/national-confer ... Email: email@example.com Phone: 215-997-9400 Diseases: Bullous Erythroderma Ichthyosiformis Congenita of Brocq • Congenital Ichthyosiform Erythroderma • Harlequin Ichthyosis • Ichthyosis • Ichthyosis lamellar, autosomal dominant • Autosomal recessive congenital ichthyosis, NIPAL4-related Download Showing 1 of 1 events. Show All Show Less This entry will be permanently deleted. Are you sure you want to continue? Are you sure you want to change the status of this editor?