About Us
Who is FIRST?
FIRST is the world’s leading patient advocacy organization dedicated to improving lives and seeking cures for those affected by ichthyosis and related skin types, or epidermal differentiation disorders. Founded in 1981 by parents and physicians who refused to face this condition alone, FIRST has spent more than 40 years educating, inspiring, and connecting affected individuals, their families, medical professionals, researchers, and the general public. Our pillars include:
Community & Support — We connect patients and families to one another through local one-day meetups, national conferences, and online communities — because no one should navigate ichthyosis alone.
Education & Resources — We provide a comprehensive library of type-specific information, tools for daily living, financial assistance, and guidance for every stage of life — from a new diagnosis in the NICU to adulthood.
Medical Access — We connect patients to qualified medical professionals and support physicians with clinical resources, including the Edvyce consultation portal.
Research — We fund and promote scientific investigation into the causes, treatments, and potential cures for ichthyosis through our Research Grant Program, the National Ichthyosis Registry, and clinical trial support.
Advocacy — We amplify the voice of our community with policymakers and the public to improve access to care and raise awareness of these rare conditions.
Education & Resources — We provide a comprehensive library of type-specific information, tools for daily living, financial assistance, and guidance for every stage of life — from a new diagnosis in the NICU to adulthood.
Medical Access — We connect patients to qualified medical professionals and support physicians with clinical resources, including the Edvyce consultation portal.
Research — We fund and promote scientific investigation into the causes, treatments, and potential cures for ichthyosis through our Research Grant Program, the National Ichthyosis Registry, and clinical trial support.
Advocacy — We amplify the voice of our community with policymakers and the public to improve access to care and raise awareness of these rare conditions.
Our Vision
A future where ichthyosis is understood, treatable, and curable — and where every affected person and family is empowered to live fully until that day comes.
Our Mission
Improve lives and seek cures for those affected by ichthyosis and related skin types, or EDD.
Core Values
Compassion – We are a caring organization recognizing the unique challenges faced by our community and will provide support with kindness and empathy.
Hope – While celebrating today’s strengths and successes, we strive to convey to all individuals affected by ichthyosis that the future will be filled with friendship, support and a cure for ichthyosis.
Integrity – We will conduct ourselves in a trustworthy, ethical, and reliable manner in everything we do and say.
Responsiveness – We provide accurate and timely information about ichthyosis to meet the medical, social and educational needs of our community.
Hope – While celebrating today’s strengths and successes, we strive to convey to all individuals affected by ichthyosis that the future will be filled with friendship, support and a cure for ichthyosis.
Integrity – We will conduct ourselves in a trustworthy, ethical, and reliable manner in everything we do and say.
Responsiveness – We provide accurate and timely information about ichthyosis to meet the medical, social and educational needs of our community.
Inclusion Statement
The FIRST community reflects the full spectrum of human experience. We believe every person — regardless of race, ethnicity, religion, gender identity, sexual orientation, disability, or background — deserves compassionate support, accurate information, and a place to belong.
FIRST’s mission has no exclusions. We are committed to improving lives and seeking cures for all those affected by ichthyosis and related skin types, and to being an organization where everyone is seen, valued, and welcomed.
FIRST’s mission has no exclusions. We are committed to improving lives and seeking cures for all those affected by ichthyosis and related skin types, and to being an organization where everyone is seen, valued, and welcomed.
National Conference
Join us in Minneapolis for the 2026 National Conference. Connect, share, and support others with Ichthyosis. Learn more here.
Double Your Donation to FIRST
Maximize your donation to FIRST with a company match Learn more here.
