Who is FIRST?
If you or a family member has ichthyosis or a related skin type, and is in need of support, education, connection, and compassion, you have come to the right place. FIRST is the world's leading patient advocacy organizaton dedicated to improving lives and seeking cures for those affected by ichthyosis and related skin types. FIRST educates, inspires and connects all affected individuals, their families, medical professionals and the general public with regard to ichthyosis and the related skin types.
FIRST's vision is to reach every affected person, their family, and all related medical professionals through our comprehensive array of resources, including a support network, publications, and a website housing a vast library of resources.
FIRST's goal is to provide trustworthy and compassionate support, reliable information, and useful resources throughout a person's entire lifetime.
Above all, 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 Conference, provides attending families an opportunity to forge unforgettable connections with each other and to consult with leading medical experts.
Through its 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.
With the assistance of the world-class experts on its Medical & Scientific Advisory Board, FIRST directs and sponsors research in the areas that matter most to our members.
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.
How can we help you?
Managing ichthyosis and other severe skin disorders oftentimes presents many medical and psycho-social issues, from birth through early childhood and into adolescence, young adult, adult and elderly stages of life. Our members can pro-actively meet these challenges head-on by an advanced understanding provided by other fellow members along the continuum of physical, medical, emotional, and social needs and solutions.
Our Foundation works best for you and your family when the barriers of finding supportive and enriching connections are removed. We do this most effectively through many useful programs, services, and technology resources that you will read about in this folder. You will swiftly come to realize that FIRST represents a major opportunity to be educated, inspired, and connected – for life!
How can you get more information?
Welcome to FIRST, and we look forward to helping you secure connections that will last a lifetime. We cannot wait for YOU to join!
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The official registration and financial information of Foundation for Ichthyosis & Related Skin Types, Inc.® may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.