Voluntary Health Agency Member
FIRST is a vibrant, growing foundation connected to its members and families by the special skin and unique management needs of individuals and families with ichthyosis and related skin types.
Our mission is to improve lives and seek cures for those affected by ichthyosis and related skin types.
FIRST provides information about ichthyosis through our website, via printed publications, our quarterly newsletter, and through our lobbying and advocacy efforts. Our signature event, the National Family Conference, provides attending families an opportunity to forge unforgettable connections with each other and to consult with leading medical experts. World-class experts serve on our Medical & Scientific Advisory Board. FIRST directs and sponsors research in the areas that matter most to our members. Through our sponsorship of the Ichthyosis Registry, the Tele-Ichthyosis Program, and the Frontiers in Ichthyosis Research Conference, FIRST enables connections among researchers and physicians and provides support for their efforts.
Skin serves a very important function in life – it connects specialized cells and layers of tissue to create an important barrier that protects our bodies. However, when genetic mutations cause skin to form improperly at birth, the impact on the individual, parents, family and friends can seem overwhelming. Asking what just happened, wondering what is next, and hoping you are not the only ones, are among the early concerns and questions. Be assured that you are not the only ones.
This organization has completed the National Health Council’s Standards of Excellence Certification Program and meets the highest standards of accountability, ethical practice, organizational effectiveness, and good public stewardship.
To learn more, click on the links below.