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Phone: 800-545-3286
2616 N. Broad Street
Pennsylvania 18915

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Programs: Our signature event, the National Family Conference, provides attending families an opportunity to forge unforgettable connections with each other and to consult with leading medical experts. FIRST also hosts smaller one-day Regional Meetings.

FIRST officially launched a Research Grant program in 2006. This program promotes and strengthens investigation into the causes, treatments, and potential cures for ichthyosis. Summaries of the many projects that have been funded by FIRST are available on our website.

Our mission is to educate, inspire and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy and research funding for better treatments and eventual cures.

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We learned of FIRST in 2005 when our son was born and diagnosed with Congential Ichthyosiform Erythroderma (also known as ARCI). We quickly learned they were the only organization of its kind in the US dedicated to helping families living with or caring for others with ichthyosis. The disease is ... more »
When our son was born with a collodian membrane covering his body, and the doctors in our major-city hospital had to run to the medical library to be able to diagnose him, FIRST came into our lives as a comforting and knowledgeable resource. This caring advocacy organization has made a tremendous ... more »
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