Foundation for Ichthyosis & Related Skin Types, Inc.

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

01/08/2026

✨ Need a little extra support for managing ichthyosis? ✨
The FIRST-Aid Skin Care Fund is here to help! 💙

This special grant program from FIRST, along with the help of Beiersdorf, provides financial assistance to individuals affected by ichthyosis or related skin types who need help covering skin care needs and devices. It’s designed to ease the cost of products and treatments that make a real difference in daily life. 💧🧴

👉 Who can apply?
Individuals with ichthyosis or a related skin type who meet the eligibility criteria.

👉 How does it help?
Grants can support skincare expenses when finances are tight.

👉 Want to apply or learn more?
Visit the link below to check eligibility and submit your application by January 31st! 👇

🔗 https://www.firstskinfoundation.org/first-aid

💙

01/07/2026

📣 LAST CHANCE to RSVP! 📣

Don’t miss the Northwestern Ichthyosis Warm-Up — our annual community gathering taking place on Saturday, January 17, 2026 in Chicago, IL! ❄️✨

Join families, individuals, caregivers, and researchers for an afternoon of connection, support, and shared inspiration. Hosted in partnership with Northwestern University & Lurie Children’s Hospital, this event includes networking, updates on research and care, discussion groups, and a chance to meet new friends.

📍 Where: Lurie Children’s (225 E. Chicago Ave, Rooms 11-142 to 11-150)
🕐 Time: 1:00 PM – 4:30 PM (Networking, presentations, discussions & community time)
📧 RSVP: Email Giuliana Wells at giuliana.wells@nm.org
to save your spot!

Whether you’re long-time in the ichthyosis community or newly connecting, we’d love to see you there! ❤️ Let’s learn, support, and grow stronger together.

01/05/2026

📣 Big News! The FIRST National Conference 2026 is happening June 26–28, 2026 in Minneapolis, Minnesota! 🌟

Join the ichthyosis community — individuals, families, clinicians, researchers, advocates, and friends — for three days of connection, learning, inspiration, and support at the Hyatt Regency Minneapolis. 📍

🗓 Dates: June 26–28, 2026
🏨 Location: Hyatt Regency Minneapolis, 1300 Nicollet Mall
💡 Conference sessions, workshops, panels, and networking opportunities await!

Whether you’re looking to learn from experts, share your story, find community, or support others, this is the place to be. Registration is open now — don’t miss out! 🙌

👉 Learn more and register: firstskinfoundation.org/minneapolis-2026
://www.firstskinfoundation.org/minneapolis-2026

12/31/2025

WOW! We did it! We met our goal of $50,000, which will be matched with another $50,000 from a generous donor!

Thank you all, from the bottom of our hearts, for caring about this rare community.

12/22/2025

“They were told she didn’t have long to live.” – CNN

✨ An Unexpected Adoption is a breathtaking, against-the-odds memoir about courage, resilience, and love.

When Tina and Rog met Mui—an abandoned orphan baby with a life-limiting, appearance-altering condition—they were only meant to help for the summer. Doctors said she wouldn’t survive infancy. There was no plan, no money, no support network—just fierce determination and unwavering commitment.

Today, Mui is believed to be the fourth-oldest survivor with Harlequin Ichthyosis and the world’s first award-winning sportswoman with the disorder. Unfiltered, fearless, and unapologetically herself, Mui’s journey spans unimaginable cruelty and cyberbullying to global recognition and moments few could ever dream of.

Raw, powerful, and deeply moving, An Unexpected Adoption tells the real story behind the headlines—of trauma, survival, and a family that chose love when the world said it was impossible.

🖤 “In short, she’s an inspiration.” – The Guardian
📖 A story that will stay with you long after the final page.

12/19/2025

📣 Advocacy Alert: Save the Date!

🗓 CSD Hill Day | May 17-19, 2026

The Coalition of Skin Diseases is heading to Capitol Hill! Hill Day brings our community together to share lived experiences, elevate patient voices, and advocate for policies that support research, access to care, and patient support.

More details coming soon. For now, save the date and let cwassel@firstskinfoundation.org know if you'd like to join us! Scholarships are available. Preference will be given to those states that need representation.

Together, we can turn our experiences into action and make our voices impossible to ignore. 💙