Foundation for Ichthyosis & Related Skin Types, Inc.

09/01/2025

Stay informed on ichthyosis care with our updates on research, patient surveys, and events. Your insights are vital for advancing care and treatment. Participate in our Patient Voice Survey to make a difference. Engage with our community at upcoming one-day meet-ups.

https://conta.cc/4mDlWiI

Email from Research articles, Apply to Speak at the National Conference       September 1, 2025 eNews Words of Wisdom - Jeyza I may be speaking into the void a little with this post, but I’m not sure

08/28/2025

Joe Galluccio was a lifelong boatman and he had ichthyosis. Upon his passing in 2023, he surprised us with a transformative gift for FIRST in his will. If you’d like to follow his lead, use our partner FreeWill to create your free will and legacy within 20 minutes: https://frwill.link/FIRST_0825

08/28/2025

🌟 Connect. Learn. Support. 🌟

Join us for FIRST’s One-Day Meet Ups – a unique opportunity for individuals and families affected by ichthyosis to connect with others, share experiences, and gain valuable resources. Beiersdorf and BioCryst have sponsored these meetings, which allows FIRST to reduce the cost to you!

📍 Upcoming Locations:
✅ Connecticut – September 13, 2025
✅ Detroit – September 20, 2025
✅ Palo Alto – October 25, 2025

✨ What to Expect:
✔ Meet others who understand
✔ Educational sessions with experts
✔ Tips for daily care & advocacy
✔ Surprise celebration for the 100 anniversary of Aquaphor

📌 Register now and be part of this amazing community!
🔗 CT - www.firstskinfoundation.org/events/09-13-2025/connecticut
MI - www.firstskinfoundation.org/events/09-20-2025/detroit
CA - www.firstskinfoundation.org/events/10-25-2025/palo-alto

08/27/2025

Every swim stroke supports research, advocacy, and community programs for those living with ichthyosis. Join us in pushing closer to answers — together. https://www.firstskinfoundation.org/events/08-30-2025/yale-lab-swim

08/26/2025

The Schlitt and Goff families are hosting their 3rd Annual Co****le event on September 6th. Won't you join them in Livonia, Michigan? https://www.firstskinfoundation.org/events/09-06-2025/cornhole-tournament

08/26/2025

Watch the latest Netherton Now video where Dr. Mellerio highlights the severe burden of Netherton Syndrome in infants and children

In this new episode of the NETHERTON NOW series, Professor Jemima Mellerio, a recognized authority in dermatology and genetic skin disorders, highlights the ...

08/26/2025

Your story matters! Join our ichthyosis survey to drive change.
https://conta.cc/3Vi4a8n

Email from Join our survey and make a difference.     Join Our Survey     Participate in our patient voice ichthyosis survey to help us enhance support and resources for affected individuals and famil

08/26/2025

FIRST’s Patient Voice Anonymous Survey is LIVE—and we need YOUR voice (affected person or caregiver) to shape the future of research, care, and support.

Just 10 minutes - completely anonymous small effort, BIG impact

Your Voice can drive real change for people living with these conditions https://www.surveymonkey.com/r/GZQQCXH

08/25/2025

Last chance! Apply for aid, by August 31st, to buy items to help your ichthyosis https://www.firstskinfoundation.org/first-aid

08/23/2025

National Conference Speaker Application--If you'd like to apply to become the next National Conference keynote speaker, please take a look at the requirements and apply here. https://www.firstskinfoundation.org/minneapolis-speaker

08/22/2025

A few members of The Choate Lab will be participating in a open swim fundraiser to benefit FIRST. Click here to help support them! https://www.firstskinfoundation.org/news/the-choate-lab-will-participate-in-a-fundraising-swim

08/20/2025

This week we celebrated National Patient Advocacy Day by honoring the relentless advocates who give voice to the 30 million Americans living with rare diseases. Your courage, determination, and persistence continue to drive meaningful change and bring hope to countless families. https://22731230.hs-sites.com/share/hubspotvideo/194710800747?utm_campaign=Rare%20Report&utm_medium=email&_hsenc=p2ANqtz--51I3KZ1MuXuYZNWAKdZwGo4J5y46jIJl0SA-pczQQkb_9iRXDjOwETVRZbfFdkHa0zitviziRoSA87qefK75sgorOO116FsXB5x3Qm7LSvM2loNs&_hsmi=376793160&utm_content=376793160&utm_source=hs_email