FIRST is celebrating 40 years serving the ichthyosis community!

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.

Our Vision.

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.

Our Goal.

FIRST's goal is to provide trustworthy and compassionate support, reliable information, and useful resources throughout a person's entire lifetime.

Our Mission.

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 is governed by a volunteer Board of Directors and employs a professional staff .
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

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.

Permission to use material from this website / reprints / copyright
The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) retains copyright on the content of this site, unless otherwise noted.

Reprint or reuse of information from this site without change
To request permission to use information from this website for other than personal use, send an email describing intended use, duration and contact information to

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Translations or adaptations of Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) content must be reviewed and approved by the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST). Please send an email describing intended use, duration and contact information to

Using content from Foundation press releases
Reprint of Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) content or references to Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) contact information in an organization’s press release must be approved by the public relations director of the Foundation. Please send queries to

Using any of the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) registered trademarks(logos) without the Foundation’s prior consent is strictly prohibited. Please send written requests describing intended use, duration, and contact information to

Photographs and graphics
The photographs and graphics on our website are not available for reproduction by third parties.

Linking policy
When linking to the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) website, web managers should be aware that the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) trademarks are not available for posting or replication on third party websites without a written agreement with the Foundation. As part of the permission agreement for web linking, third parties must post the following with any trademark, URL, or content used from the Foundation website:

Linking Disclaimer: The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is not responsible for information or advice provided by others, including information on websites that link to Association sites and on third party sites to which the Foundation links. Please direct any questions to

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) works to ensure that the information provided on its authorized website is accurate, timely and useful. However, the information contained on Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) website should not be considered medical guidance or professional advice. The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST), its affiliates or agents, or any other parties involved in the preparation or publication of this site are not responsible for errors or omissions in information provided on this site or any actions resulting from the use of such information. Visitors are encouraged to confirm the information contained herein with other reliable sources and to direct any questions concerning their personal health to licensed physicians or other appropriate health care professionals. Corrections and additions to this site will be made when necessary or as time permits.

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.


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