Foundation for Ichthyosis & Related Skin Types, Inc.

10/16/2026

📣 WE’RE HIRING! Join the FIRST Team!

The Foundation for Ichthyosis & Related Skin Types (FIRST) is looking for a Part-Time Administrative Assistant to help support our mission of improving the lives of individuals and families affected by ichthyosis.

💻 Position: Part-Time Administrative Assistant (Remote, U.S.-based)
⏰ Hours: 10–15 hours per week

We’re seeking an organized, detail-oriented, and compassionate professional who enjoys keeping things running smoothly and making a difference behind the scenes.

What you’ll do:
✨ Support daily virtual office operations and communications
✨ Maintain donor records and CRM data
✨ Coordinate meetings, schedules, and logistics
✨ Assist with newsletters, patient resources, and community communications
✨ Help advance FIRST’s advocacy, education, and support initiatives

What we’re looking for: Administrative experience, proficiency in Microsoft 365, familiarity with DonorPerfect or a similar nonprofit CRM, excellent organizational skills and a passion for supporting individuals and families affected by rare skin conditions.

❤️ Want to put your skills to work for a meaningful mission? We’d love to hear from you!

📩 Apply today! Email Chris Boynton [email protected]

Please share this post with someone who might be a great fit!

10/15/2026

FIRST's latest eNews is now available, featuring essential insights on skin health and big announcements too. This edition emphasizes the importance of dermatological knowledge and its impact on patient care. We invite professionals in the field to explore these valuable resources and enhance their practice. https://conta.cc/4rPnEAL
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10/13/2026

FIRST Emerging Leaders is seeking passionate young individuals aged 16–25 to engage in leadership, advocacy and group-building within the ichthyosis community. This program offers hands-on experience, mentorship and networking opportunities to develop essential skills.

Apply by October 31, 2026, to be part of the future of FIRST.

https://conta.cc/3Uowucs

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Learn more       YOUR VOICE. YOUR IDEAS. YOUR IMPACT. Introducing FIRST Emerging Leaders Are you 16–25 and ready to get more involved

10/12/2026

As a follow-up to The National Conference, insights and connections remain invaluable.

Even if you didn't attend, we encourage you to explore these sessions presented by Sarah Dutton:





https://conta.cc/3UmJHm4https://conta.cc/3UmJHm4

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Follow-Up Resources from National Conference Hi FIRST Community, The National Conference may be over, but the conversations, connectio

10/12/2026

🎓 Celebrating the 2026 UFIRST Scholarship Recipients! 🎉

Big dreams, bright futures and incredible potential! 💙

FIRST is proud to recognize our 2026 UFIRST Scholarship recipients as they pursue their educational goals and work toward making a difference in their communities and beyond.

From genetics and biology to education, art, music, architecture and more, these talented students are following their passions and building exciting futures. Their determination and aspirations remind us that ichthyosis does not define what’s possible!

Join us in congratulating this year’s UFIRST Scholars and wishing them continued success in their academic journeys! 👏

Learn more about our recipients and their goals: https://firstskinfoundation.org/ufirst-26/

10/09/2026

🎓 UFIRST SCHOLARSHIP APPLICATIONS ARE OPEN!

The 2nd UFIRST Scholarship Cycle of 2026 is now accepting applications!

Thanks to the generous support of Beiersdorf, makers of Eucerin and Aquaphor, FIRST will award five $5,000 scholarships to help students affected by ichthyosis or a related skin type pursue their education during the Winter/Spring 2027 school year.

Eligible applicants may be pursuing post-secondary or graduate education at an accredited university, college, junior college, or trade school. And yes, even if you have received a UFIRST/Beiersdorf scholarship in the past, you may apply again!

📚 Five scholarships | $5,000 each
📝 Applications accepted online or by fax
📅 Winners notified by the end of November
🎓 Funds may be used toward tuition and/or fees
Don’t miss this opportunity to invest in your education and your future!

👉 Learn more and complete the application: https://firstskinfoundation.org/news-articles/2nd-ufirst-scholarship-cycle-now-accepting-applications/

10/08/2026

🌟 Could YOU be a FIRST Emerging Leader?

Are you 16–25 and ready to use your voice, ideas, and passion to make a difference in the ichthyosis community?

The FIRST Emerging Leaders program is designed to help young people build leadership skills, connect with others, get involved with advocacy and help shape the future of FIRST. 💙

No board experience required - just energy, ideas, and a desire to make an impact!

🚀 Ready to step up?
Learn more and apply today:
https://firstskinfoundation.org/first-emerging-leaders/

10/07/2026

What is ichthyosis? And what does EDD mean?

Ichthyosis and related skin types are rare genetic disorders that affect the skin’s ability to function normally. They can cause dry, scaling, thickened, and/or red skin and the impact can extend far beyond the skin.

In 2025, researchers introduced Epidermal Differentiation Disorders (EDDs) as a broader, genetics-based way to classify ichthyosis and related conditions. While the terminology is evolving, the lived experience remains the same: these are lifelong conditions that can affect physical health, daily routines, emotional well-being, and quality of life.

There are many different types of ichthyosis and EDDs, each with its own characteristics and challenges.

💙 Learn more. Understand more. Share more.

Visit FIRST to learn about ichthyosis and EDDs, the different types, what causes them, associated challenges, and resources available to individuals and families.

Learn About Ichthyosis & EDD https://firstskinfoundation.org/about-ichthyosis-or-edd/

10/01/2026

🔬 Your Participation Can Help Shape the Future of Ichthyosis Research

When you live with a rare condition, every person who participates in research matters.

The National Registry for Ichthyosis & Related Skin Types, supported by FIRST and managed through Yale University, is an important resource for advancing ichthyosis research. The Registry brings together information from people with ichthyosis to help researchers better understand these rare conditions, their causes, genetics, and potential treatments.

Why is participation so important?

🧬 More participants = more information for researchers.
📊 Registry data can help researchers identify patterns and better understand different types of ichthyosis.
🔎 The Registry can help connect eligible individuals with researchers and relevant clinical research opportunities.
🧪 For many participants, genetic testing may be available at no cost through the Registry.

Research into rare diseases can take years and researchers need people from our community to make that research possible.

By joining the Registry, you aren't just sharing your information. You're helping build the knowledge that can lead to better diagnosis, better treatments and ultimately cures.

💙 If you have ichthyosis or a related skin type, consider becoming part of the research community.

Learn more and find out how to enroll: https://firstskinfoundation.org/resources/ichthyosis-registry/

10/01/2026

Stay up to date on ichthyosis. Read the latest issue of FIRST's eNews https://conta.cc/4zQ45vN