Foundation for Ichthyosis & Related Skin Types, Inc.

02/10/2026

🎥 Looking for trusted education, real stories, and expert insight on ichthyosis and related skin types?

Subscribe to the FIRST YouTube Channel! From conference sessions and research updates to personal journeys and practical skin care tips, our videos are here to inform, empower, and connect our community—wherever you are. 💙

👉 https://www.youtube.com/

Don’t forget to like, subscribe, and share to help us reach more families and individuals who need support.

02/06/2026

Latest eNews - Explore the transformative experience of Camp Discovery for children with ichthyosis, Azitra Trial for Nethertons and CRISPR technology. 🔗 in Bio


https://conta.cc/4a41DHe

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Steroids , National Conference and Azitra     January 31 , 2026 Brenna and Courtney Talk Camp Experience The 2025 story of Brenna and

02/05/2026

🎉 Join Us at the FIRST National Conference — Minneapolis 2026! 🧡
📅 June 26–28, 2026 • 📍 Hyatt Regency Minneapolis

Whether you’re living with ichthyosis or related skin types, a caregiver, clinician, researcher, or advocate — this is the event you don’t want to miss! 🙌

✨ Why Attend?
➡️ Connect with Your Community — Unite with hundreds of individuals and families who get it — share stories, support, and strength. This is where lifelong friendships begin.
➡️ Learn from Experts — Engage in powerful sessions and discussions led by top dermatologists, researchers, and patient advocates.
➡️ Gain Practical Tools & Insights — Workshops + panels = real, actionable info for managing daily life and care.
➡️ Create Lasting Inspiration — Hear real experiences from community leaders and keynote speakers that will fuel your advocacy and journey forward.
➡️ Explore Minneapolis Together — Turn your trip into an adventure with local sights like art museums, parks, and more!

👨‍👩‍👧‍👦 All ages are welcome — strategic programming + several meals included — it’s truly a full weekend of connection, learning, and fun.

✨ Register today & be part of something powerful!
🔗 https://www.firstskinfoundation.org/minneapolis-2026

02/03/2026

🎓✨ Empowering Futures with UFIRST! ✨🎓

We’re proud to spotlight the UFIRST Scholars Program — a special scholarship initiative from the Foundation for Ichthyosis & Related Skin Types (FIRST) designed to help students affected by ichthyosis or related skin conditions pursue their dreams of higher education or a trade school. 🌟

Since 2010, UFIRST has helped dozens of scholars reach their academic goals by providing financial support for tuition and educational expenses — giving students the freedom to focus on learning, leading, and making a difference. 🚀📚

💡 Who it’s for: Students affected by ichthyosis or related skin types
🎓 What it supports: Post-secondary, vocational, or graduate education
💪 Why it matters: Investing in education builds confidence, opportunity, and community impact for those with rare skin conditions.

👉 Learn more or support the UFIRST Scholarship Fund at: firstskinfoundation.org/ufirst

🎓💙

01/30/2026

✨ ¿Vives con ictiosis o conoces a alguien que lo hace? ✨
Descubre recursos en español creados especialmente para ti por la Fundación para la Ictiosis y Tipos de Piel Relacionados (FIRST) 🇪🇸🧴💙

🌟 En este sitio encontrarás:
🔹 Información clara sobre la ictiosis y su genética
🔹 Consejos prácticos para el cuidado diario de la piel
🔹 Folletos útiles para familias y cuidadores
🔹 Materiales educativos confiables y actualizados

📌 Ya seas una persona afectada, un padre, familiar o amigo, este recurso te ayudará a entender mejor esta condición y a manejarla con más confianza.
👉 Visita: https://www.firstskinfoundation.org/en-espanol-informacion-para-la-gestion-de-la-ictiosis

💬 Comparte para que más personas hispanohablantes puedan acceder a esta información valiosa 🌍✨

01/29/2026

💙 Your Story Matters! 💙

We want to hear from our amazing community! Every journey with ichthyosis is unique, powerful, inspiring or challenging — and your story could help others feel supported.

✨ Share your ichthyosis story with us!
Whether it’s a moment of triumph, a challenge you’ve overcome, or something that keeps you going — your voice can make a difference.

👉 Email your story and photo to cwassel@firstskinfoundation.org

Let’s lift each other up and celebrate our strength together! 💬🧡

01/23/2026

🌟 Finding the Right Doctor Just Got Easier! 🌟

If you or someone you love is navigating life with ichthyosis or a related skin type, getting connected with a knowledgeable dermatologist can make all the difference. That’s why FIRST’s Physician Referral Service exists — a trusted resource to help you locate specialists across the U.S. who truly understand these rare skin conditions. 💙

👩‍⚕️ What it offers:
• A curated list of dermatologists experienced with ichthyosis and related skin types
• Contact info to help you reach out and start the conversation
• A supportive step toward the care you deserve

Whether you’re newly diagnosed or looking for a second opinion, this service can help guide you to experts familiar with your needs. 💼✨

👉 Find a physician near you: https://www.firstskinfoundation.org/physician-referral-service

01/20/2026

💙 Double Your Impact for Ichthyosis Support! 💙

Did you know your gift to the Foundation for Ichthyosis & Related Skin Types could go twice as far? 🎁
Many employers offer Matching Gift Programs that can double — or even triple — your support with just a quick request from your HR department! 🙌

➡️ When you make a donation, ask your employer (or your spouse’s employer!) if they match charitable contributions. Some companies even match gifts from retirees! 💼👩‍💻👨‍🔧
It’s an easy way to amplify your impact for research, advocacy, and support services for the ichthyosis community.

🔗 Learn more and find out how to submit a matching gift here:
👉 https://www.firstskinfoundation.org/matching-gifts

Let’s make every dollar count! 💪💙

01/18/2026

Rare Disease Day (February 28), is an internationally recognized awareness initiative held annually on February 28. It is dedicated to raising global awareness for the more than 300 million people living with rare diseases, including those with rare dermatological conditions.

For GlobalSkin and the RareDERM Community - a network of over 153 patient organizations representing approximately 29 rare dermatological diseases across all six WHO regions, Rare Disease Day is a powerful opportunity to spotlight the burden of rare skin diseases and advocate for better recognition, research, and resources globally.

If you'd like to apply to attend this year, click here for more information. https://globalskin.org/rare-disease-day-fund-2026

01/16/2026

✨ **Breastfeeding with Ichthyosis: You’re Not Alone 💙**

Whether you’re expecting or preparing to breastfeed, living with ichthyosis doesn’t mean you can’t have a successful experience — but being prepared helps. FIRST’s guide offers practical tips from real community members and experts on how to care for your skin, work with healthcare providers, and support milk flow while navigating the unique challenges ichthyosis can bring. 👶🤱💧

💡 Highlights you’ll find:
• Preparing your skin before baby arrives
• Working with your doctor on safe topical and oral medications
• Tips to help prevent clogged ducts and better breastfeeding comfort
• Support from others in the ichthyosis community 💛

✨ *You deserve support, understanding, and confidence on your breastfeeding journey.* Tag someone who could benefit from this! 💬

🔗 **Read more:** https://www.firstskinfoundation.org/ichthyosis-and-breastfeeding

01/15/2026

Stay updated with FIRST ENews https://conta.cc/3ZeJAYA

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Prior Authorization and Azitra Trial     January 15 , 2026 Member Story - Tera's Wall Mural at BioCryst The blog by Tera Grasser, a pr