National Conferences

FIRST hosts a 3-day national conference every two years. This is FIRST's premier event open to all members of the Foundation. Traditionally the location for the conference moves across the country each time the conference is held.

National Conferences are a fantastic opportunity for affected individuals and their families to meet and network with other affected individuals and consult with leading medical experts.  They connect those searching for information and support in living wih ichthyosis and related skin types.

Registration is now open for the FIRST National Conference 2022-Providence!  Follow this link for the details.

Patient Support Forums

These 1-day meetings are filled with medical information, networking, sharing about product ideas, and skin care routines.  The meetings will include a light breakfast, lunch, and childcare for families with children. The next meeting is planned for November 13, 2021 in Rehoboth, Delaware. Follow this link for the information.



Are You the FIRST to Know?
The FIRST to Know and FIRST Connects calls and video events are a great way to “meet” other families and individuals.  Sharing tips, stories and challenges makes living with ichthyosis easier.  All calls are held in Eastern Time, and are phone calls only, so you only need a phone, not a computer.



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