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 organization 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 printed 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 TeleIchthyosis 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?
The skin disorders known as the ichthyoses are not all that common. The good news is FIRST is here for you! International in scope, our Foundation is where you will receive highlyqualified, caring, and professional staff to help you find help throughout all stages of your life.
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.
FIRST also is advised by nationally and internationally recognized dermatologists and researchers on its Medical and Scientific Advisory Board.
FIRST is a registered 501(c)(3) nonprofit entity.
FIRST is the proud recipient of several AAD Gold Triangle Awards.
For more information about FIRST's initiatives and financial status, read the most current President's Report and Chief Financial Officer's Report, or see FIRST's entry on GuideStar.com.
We also invite you to learn more about FIRST's long history
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?
As you peruse the information, think about ways you can make even deeper connections through our Regional Support Network and other affiliated programs. For new members, we invite you to call our staff directly to learn more about how the Foundation can help you get started, engaged and involved.
Welcome to FIRST, and we look forward to helping you secure connections that will last a lifetime. We cannot wait for YOU to join!
The membership of FIRST and the greater ichthyosis community represent the vast spectrum of human existence. We cannot and will not tolerate bigotry towards one group while advocating for the often marginalized and minimized members of our own community. FIRST's mission is to "improve lives and seek cures for those affected by ichthyosis and related skin types". There are no exclusions. We seek cures and to improve lives for ALL those affected, including those who identify as LGBTQIA. We celebrate diversity and will continue to grow and take the right steps as an organization to ensure we exist as a safe place serving and welcoming all.
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