Contact:  Maureen Neville


Foundation for Ichthyosis & Related Skin Types Celebrates 35 Years!

In January of 1981, the very first official support group for patients affected by ichthyosis and related skin types opened its doors in San Francisco, California. Thirty-five years later, that very same local support group has evolved and grown into the leading patient advocacy organization for ichthyosis worldwide.

FIRST opened its doors in 1981 to support and connect local patients and their families. For the past 35 years, it has grown into the global leading patient advocacy organization for ichthyosis and related skin types. Today, FIRST maintains a database of over 16,000 members worldwide, has funded nearly $1.7 million in research grants, hosts national and international conferences, and houses a comprehensive library of resources, programs and support materials for those affected with ichthyosis and related skin types.

“There is no cure for ichthyosis, only treatments,” said Jean Pickford, CEO of FIRST.  “Technology has certainly spurred our patient outreach over the past decade, but dedication and compassion has also played a major part. The commitment of our board of directors, volunteers, staff, and world renowned physicians and scientists, some of whom have been here from the very beginning, is unprecedented. We are all working together to make a difference in our members' lives.”

According to FIRST, each year, more than 16,000 babies are born with some form of ichthyosis, of those, approximately 300 are born with a moderate to severe form.  This disease affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.



Learn about the history of FIRST.

Meet our members and discover how they have been supported by the FIRST community for that past 35 years.

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