Ichthyosis Focus E-News

January 31st, 2024

Member Story - Marc

as told by his mom Denise

"I found out I was pregnant with my first child and was due March 1997. My husband and I were thrilled, and we made sure we did all the right things and read all the books to ensure that we would have a healthy baby. On March 2nd our baby was born, and we were introduced to the word ichthyosis for the first time."

Read more here.

Who after me?

The Unspoken Dilemma of Rare Diseases

By Prasana Shirol, Rare Disease Advocate

Co-founder & Director – ORDI

Though life continues, the question lingers: Who after me? This isn’t just a challenge; it’s the daily reality for families grappling with rare diseases. Read more here.

CSD on the Hill - Raise Your Voice

The Coalition of Skin Diseases, including The Foundation for Ichthyosis & Related Skin Types, Inc. heads to the Hill each year advocating for access to appropriate and quality health care and treatments. Watch this informative video from the CSD.

Derm Podcast with Dr. Keith Choate and Dr. Hannah Kopelman

Drs. Choate and Kopelman delve deep into the world of ichthyosis.They discuss early diagnosis, treatment options, groundbreaking genetic testing, and the emotional impact the skin condition can cause families.

Watch Here

0:00 Intro to Ichthyosis

4:40 Treating Ichthyosis

9:57 Genetic testing

20:27 Common types of Ichthyosis

26:37 Treating hypertrophy

33:15 Causes of itch

38:45 Other treatment options

FIRST on TikTok

We're thrilled to announce that FIRST is now stepping into the TikTok universe! Follow us @FirstSkinFoundation on TikTok to join the fun and get a front-row seat to our captivating content!

Expect nothing less than: