Foundation for Ichthyosis & Related Skin Types, Inc.

07/25/2025

Today is Genetic Testing Action Day

Talk to your doctor�

Have concerns about your child’s development or other medical issues in your family? Tell your doctor you want to discuss genetic testing. Empowered by this Parent Toolkit, explore with your doctor how genetic testing might benefit your child or you. https://www.startgenetic.org/ -started

07/25/2025

Due to the generosity of Beiersdorf, the maker of Eucerin and Aquaphor, there are additional funds available for our FIRST-Aid Fund this year! The deadline to submit your application is July 31st https://www.firstskinfoundation.org/first-aid

07/24/2025

FIRST is always welcoming stories from our members, including parents, adults, relative and physicians. If you are ready, please send it, along with a photo to cwassel@firstskinfoundation.org. We will share it in a future edition of the eNews.

07/22/2025

For adults affected with ichthyosis, what are your biggest concerns as you age? Please reply in the comments, so that we can continue to create resources for you.

07/18/2025

We asked our FIRST community "What is your greatest hope for the future of life with ichthyosis?" Here is what they had to say.

07/17/2025

🌟 Caregivers, you’re not alone. Join us for a powerful evening of connection and support! 🌟

This month’s Rare Connections Caregiver Support Group features special guest speaker Felice Searles, who will present on:
💬 Caregiver Burnout: Recognizing the Signs and Finding Your Strength Again

Felice brings her experience as founder and owner of Nancy’s Home Care and Nancy’s Caregiving Institute. She is a U.S. Air Force veteran, entrepreneur, and caregiving advocate to help us better understand how to care for ourselves while supporting others with compassion.

🗓️ Tuesday, July 22
🕕 6 PM – 7 PM ET
Caregivers, please register for the event HERE https://docs.google.com/forms/d/e/1FAIpQLSfiFGx5CPB1Ds0oSGK45uvdKB2xQqx8H7thakv4ZjXWiyjX-A/viewform!

✨ And after the presentation, our moderator will continue the conversation with our regular peer support group session. Stick around to share, connect, and receive support from others who truly understand the journey. 💛

07/16/2025

Check out the latest issue of Rarity Life https://www.samebutdifferentcic.org.uk/raritylife

07/15/2025

Explore the transformative stories of our members who connected through adoption. We are also hosting One-Day Meetings in CT, MI, and CA, where community members can gather and share experiences. Additionally, learn about the latest research on tele-dermatology and KLF4 variants. Don't miss our upcoming deadlines for the FIRST-Aid Fund and The Weary Fund. Engage with us to help foster a supportive community.

https://conta.cc/44rEBY6

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Research Articles and Casting Tips       July 15, 2025 eNews Member Story - Adoptions Several of our members have connected to FIRST

07/15/2025

07/15/2025

FIRST's next three, one-day meet-ups have been scheduled. Won't you join us for connections, information, research and great conversation? Click here and scroll down on the right to register. https://www.firstskinfoundation.org/news-events

07/11/2025

What is your greatest hope for the future of life with ichthyosis? Comment below and we will share the ideas anonymously with our entire community.

07/08/2025

🌍✨ No Health Without Skin Health! ✨ Our skin is more than just a barrier; it plays a crucial role in overall health and well-being. From protecting us against infection to regulating temperature, our skin is essential! Share with us how you prioritize your skin health every day!
Foundation for Ichthyosis & Related Skin Types, Inc. Coalition of Skin Diseases