Organization: FOUNDATION FOR ICHTHYOSIS AND
Mission: TO IMPROVE LIVES AND SEEK CURES FOR THOSE AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES.
Activities: FIRST EDUCATES, INSPIRES, AND CONNECTS FAMILIES AND INDIVIDUALS AFFECTED BY ICHTHYOSIS AND RELATED SKIN TYPES. FIRST HOSTS PATIENT SUPPORT FORUMS AND ALSO PROVIDES CRITICAL INFORMATION TO ITS MEMBERS AND THE GENERAL PUBLIC THROUGH ITS WEBSITE AND CALLS TO ITS KNOWLEDGEABLE STAFF. FIRST MAINTAINS AN ACTIVE SOCIAL MEDIA PRESENCE AND FACILITATES GROUP DISCUSSIONS. FIRST PROVIDES ACCURATE, NON-BIASED INFORMATION ON THE LATEST IN RESEARCH, DIAGNOSIS, AND MANAGEMENT OF ICHTHYOSIS AND RELATED SKIN TYPES, AND CRITICAL SUPPORT TO THOSE AFFECTED WITH THESE GENETIC CONDITIONS AND THOSE THAT CARE FOR THEM.
ONE OF THE CORNERSTONES OF FIRST'S EMPHASIS ON RESEARCH IS ITS SUPPORT OF THE YALE ICHTHYOSIS REGISTRY BOTH FINANCIALLY AND THROUGH ITS PROMOTION ACCROSS ITS COMMUNICATION CHANNELS. CRITICAL TO IMPROVING THE MANAGEMENT OF THEIR CONDITION, PARTICIPATION IN THE YALE REGISTRY PROVIDES EACH AFFECTED INDIVIDUAL A GENETIC DIAGNOSIS OF THEIR PARTICULAR TYPE OF ICHTHYOSIS OR OTHER SKIN TYPE. THE REGISTRY IS ALSO VITALLY IMPORTANT TO THE RESEARCH COMMUNITY AND CONTINUES TO BE REFERENCED IN NUMEROUS STUDIES AND MANUSCRIPTS. THE REGISTRY ALSO SERVES TO PROVIDE RESEARCH OPPORTUNITIES FOR TRAINING THE NEXT GENEATION OF PHYSICIAN SCIENTISTS.
NTEE category: Voluntary Health Associations & Medical Disciplines
Secondary category: Medical Research