You have just learned that your child may have a form of ichthyosis. Although you may be feeling confused, and even a little scared, you are not alone. FIRST, the leading advocacy organization for ichthyosis has been guiding new parents with children affected with ichthyosis for over thirty-five years.  FIRST’s community consists of families, individuals and medical professionals that are compassionate, knowledgeable and very willing to lend their support. Our medical advisory board is comprised of the top doctors in the field of ichthyosis, and the opportunities to connect with this entire network are plentiful.  

The resources in this section will offer you tried and true best practices of those caretakers that have been in your very same situation, caring for an infant with ichthyosis. Both families and ichthyosis medical experts have helped develop these resources, articles, photos and videos, woven with many real life stories and testimonials. From the first moments in the NICU, to breastfeeding and bonding, to making meals and choosing medications, these resources provide the necessary tools to start your journey with a confident step forward. And always remember, FIRST is available to answer questions along the way.

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