Foundation for Ichthyosis & Related Skin Types, Inc.

09/09/2026

❄️💙 Join us for the Ichthyosis Winter Warm-Up at Northwestern! 💙❄️

Winter can bring unique challenges for people living with ichthyosis, but you don’t have to face them alone!

Join FIRST and the ichthyosis community for a special Ichthyosis Winter Warm-Up at Northwestern. It's an opportunity to connect with others, learn, share experiences and spend time with people who truly understand life with ichthyosis.

✨ Connect with the community
✨ Learn from experts
✨ Share tips and experiences
✨ Build friendships and support

Whether you’re newly diagnosed, have lived with ichthyosis for years, or are a parent, caregiver, or loved one, you are a part of the FIRST community. We’d love to see you there!

📅 Ichthyosis Winter Warm-Up at Northwestern
📍 Northwestern University

👉 Learn more and register: https://firstskinfoundation.org/event/ichthyosis-winter-warm-up-at-northwestern/

09/02/2026

FIRST's Peer Navigator Program

💙 Looking for someone who truly understands the ichthyosis journey? Or are you ready to support others?

FIRST’s Navigator Program connects individuals and families affected by ichthyosis with trained Peer Navigators who can offer understanding, encouragement, and support from lived experience.

✨ Need support? You can request to be connected with a Navigator.

✨ Want to make a difference? You can also apply to become a Navigator and help others in the ichthyosis community feel less alone.

Connection can make all the difference. 💙 Learn more about the FIRST Navigator Program and get involved today. https://firstskinfoundation.org/navigator-program/

09/01/2026

🇺🇸 LABOR DAY SALE! 🇺🇸

Treat your skin—and save! 🧴✨

For a limited time, MicrodermaMitt is 25% OFF! It’s a great opportunity to stock up on your favorite exfoliating mitts and skincare products.

The Ichthyosis Body Mitt is designed specifically for people with ichthyosis to help remove dead skin scales and leave skin feeling smoother. MicrodermaMitt also offers Body, Face, Ultra Body and other exfoliating products.

🛍️ Save 25% during the Labor Day sale! Use LABORDAY25

👉 Shop now: MicrodermaMitt Shop https://microdermamitt.com/collections/shop?_kx=Qgguc3C3Zd5yc4Hq8VyTcuzFGDJMQ0U_VmXrA3I_6N1oGAOjmnrerC5-zZ2NGnkd.VzBq7p

08/31/2026

📰 The Latest FIRST eNews Is Here!

Stay connected with the latest news, resources, research events and stories from the FIRST community. 💙

From inspiring patient stories to important updates and opportunities for people living with ichthyosis and related skin types, there’s lots to catch up on!

👉 Read the latest FIRST eNews: Read the latest eNews https://conta.cc/4yddhZD

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) 3 Survey Opportunities, Advocacy and FreeWill E News August 31, 2026     Resilience, Self-Advocacy & Strength: Portia Cina’s Keynote 

08/26/2026

Help Advance Research in Women's Sexual Health

Researchers at Mayo Clinic are conducting an anonymous survey to better understand sexual health, sexual function, and quality of life among women with different types of ichthyosis or epidermal differentiation disorders.

Participation is voluntary and involves completing a brief online survey (approximately 10-15 minutes). No personally identifiable information or protected health information (PHI) will be collected.

🔗 Survey Link: https://redcap2.mayo.edu/redcap/surveys/?s=LDTYTMDF7FECEFTP

Questions? Contact: [email protected]

08/25/2026

Did you know most Americans agree they NEED a will, but less than half of us HAVE a will? This August, for Make-A-Will Month, FIRST is sharing a will-writing tool that is free to use through our partner FreeWill. In about 20 minutes you can protect your family and, should you wish, leave a gift that supports research and community for everyone affected by ichthyosis. Begin with the link below.

https://partner.freewill.com/FIRST?utm_source=partner&utm_medium=social&utm_campaign=202608_FIRST_mawm_toolkit_fb_short

08/24/2026

Learning from the Patient Voice 💙

FIRST is proud to highlight Laura Hogan, once again, for sharing her personal experience with ichthyosis with medical students at Loyola University Chicago Stritch School of Medicine.

By speaking directly with future physicians, Laura helped students better understand what it’s really like to live with a rare skin disease and why listening to the patient’s voice is such an important part of providing compassionate, informed care.

Thank you, Laura, for helping educate the next generation of doctors and raising awareness about ichthyosis and advocating for our community! 💙

08/21/2026

📝 Need Help Finding the Right Words? FIRST Can Help!

Whether you’re explaining ichthyosis to a teacher, employer, school nurse, camp, healthcare provider or another important person in your life, you don’t have to start from scratch.

FIRST has created letter templates to help you communicate important information about ichthyosis and advocate for your needs. 💙

Explore the templates and find one that works for your situation, or use it as a starting point to create your own.

👉 Check out FIRST’s Letter Templates: https://firstskinfoundation.org/resources/letter-templates/

Because sometimes having the right words makes all the difference. 💙

08/19/2026

This August, for Make-A-Will Month, FIRST is sharing a will-writing tool that is free to use through our partner FreeWill. In about 20 minutes you can protect your family and, should you wish, leave a gift that supports research and community for everyone affected by ichthyosis. Begin with the link below.

https://partner.freewill.com/FIRST?utm_source=partner&utm_medium=social&utm_campaign=202608_FIRST_mawm_toolkit_fb_short