Foundation for Ichthyosis & Related Skin Types, Inc.

02/28/2026

https://conta.cc/4u27Kne

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Additional Conference Financial Aid, Books Available     February 28, 2026 Happy Rare Disease Day! Rare Beauty Documentary FIRST is pr

02/28/2026

Today is Rare Disease Day! 💙

Together, we raise awareness and spark change for the 300 million people worldwide living with a rare disease—along with their families and caregivers. Today we’re shining a light on those affected by ichthyosis and related skin types, and the importance of education, support, and research that moves our community forward.

Every voice, every story, and every share helps build understanding and create a more inclusive world for people living with rare conditions.

Learn more about ichthyosis and how to get involved through FIRST Skin Foundation:
https://www.firstskinfoundation.org/frequently-asked-questions

02/27/2026

ADVOCACY OPPORTUNITY ALERT!

Apply for the Coalition of Skin Disease (CSD) Hill Day 2026 Today!

CSD invites FIRST members to join them in Washington, D.C., from Sunday, May 17, through Tuesday, May 19, for their annual opportunity to elevate the voices of the 84 million Americans living with a skin disease. Over three impactful days, your will have the opportunity to:

Meet with legislators on Capitol Hill to advocate for CSD’s top legislative and policy priorities

Hear from distinguished speakers and policy experts

Participate in hands-on advocacy training designed to strengthen your influence and confidence

Apply Now https://skincoalition.org/coalition-of-skin-diseases-day-on-capitol-hill-application/

02/26/2026

Dream big & go for it! 💫 The UFIRST Scholars Program offers financial support to students living with ichthyosis or related skin types so they can pursue higher education or trade school with confidence. 💪 Applications are OPEN for Spring 2026 🎉
📌 Apply today ➡️ firstskinfoundation.org/ufirst

02/23/2026

🌟 Exciting News! 🌟
We are thrilled to announce additional financial aid funds for the National Conference thanks to the generous support of Beiersdorf, the makers of Eucerin and Aquaphor! 🙌💙

This means more opportunities for attendees to access life-changing education, community, and support. We are so grateful for Beiersdorf’s commitment to our mission and to helping our community thrive.

🔗 Learn more and apply here: https://www.firstskinfoundation.org/minneapolis-financial-aid

Thank you, Beiersdorf, the makers of Eucerin & Aquaphor, for making this possible! 💫

02/21/2026

Big shout out to FIRST’s newest top fans! 💎

Maria Quinn, Sara Choe, Richie Graham, Terri Lott Guarriello, Debbie Johnson East, Nia Nhi Tran, Shalise Webster, Lovedeep Sharma, Paty Sá, Lynna Searcher, Kelly Schlitt! 👏👏

02/20/2026

🚨 **Deadline Reminder: Diya & Aliya’s Friends (DAF) Fund** 🚨

Families in our community: don’t miss the next opportunity to apply for financial assistance through the DAF Fund!

The Diya & Aliya’s Friends Fund helps children (under 18) with ichthyosis access essentials like lotions, medications, and other treatment supplies. Since 2014, the fund has supported families around the world with meaningful financial relief.

🗓 **Application Deadline:** **April 30**
(There are two cycles each year — April 30 and October 31.)

💙 Awards can help cover treatment necessities and are available to families globally.
💻 Download and apply here: https://www.firstskinfoundation.org/daf

If your child could benefit from support, we encourage you to apply before the deadline. And if you’re able, donations to the DAF Fund help make this assistance possible for more families.

02/20/2026

We’re looking forward to gathering together in Minneapolis this June for our National Conference and want our community to know that your safety, comfort, and connection remain our top priorities.

Our team is working closely with the venue meeting planner, Amy, to ensure a welcoming, supportive environment where attendees can learn, share, and build meaningful connections. As always, we will keep participants informed of any updates and provide resources to help everyone feel prepared and at ease while traveling and attending.

"We want to reassure all attendees, partners, and exhibitors that upcoming events and conferences in Minneapolis are moving forward as planned.

The safety and security of our guests remain our highest priority. We are working closely with local officials, venue partners, and security teams to ensure a safe, welcoming environment for everyone.

Our venues are operating under standard security protocols, and there are no known safety concerns affecting attendees or event operations in the Twin Cities. Events are happening throughout our communities and people are participating at normal levels of engagement.

We look forward to welcoming you and delivering the exceptional experience you expect." Amy

02/19/2026

Attention Young Adults

EveryLifeFoundation is offering an opportunity for their YARR Leadership Academy. Now in its fifth year, it is a series of online classes offered to a select group of young adults (age 18-30) in the rare disease community.

YARR Leadership Academy students learn about roles and opportunities for patient representation in policymaking, drug development, and the regulatory process, as well as the steps it takes to enter these roles. More info is here https://everylifefoundation.org/young-adult-representatives/

02/18/2026

📍 Heading to Minneapolis the week of June 24–30, 2026 for FIRST's National Conference?
Whether you’re exploring locally, visiting friends/family, or extending your trip around the FIRST Conference, there’s tons to do in the Twin Cities! Check out these highlights:

🎶 Live Music & Concerts
• 🎤 Louis Tomlinson — The Armory on June 25 🎟️ Amazing show for pop fans.
• 🎧 Breakaway Music Festival — multi-day event in Saint Paul June 26–27 with big name artists.
• 🎸 Wolfmother — First Avenue on June 28.
• 🎼 Other local gigs and intimate shows pepper the week — from orchestras to rock venues.

🎉 Community & Outdoor Fun
• 🏳️‍🌈 Twin Cities Pride Festival (June 22–23 at Loring Park) — a vibrant celebration of inclusivity with music, food, and parade energy.
• 🎶 Peter and the Wolf performance — family-friendly evening outdoors.
• 🍻 Trivia Nights, Drag Bingo, and Open Jam sessions across downtown bars and community spaces — great ways to mingle.

🍔 Explore the City
• 🚶‍♀️ Take a stroll around the Minneapolis riverfront, lakes, or Powderhorn Park.
• 🖼️ Check out local art, markets, and cafes in Northeast & Uptown Minneapolis.
• 🍕 Whatever your vibe — food, live mural walls, bike paths, or music — the city’s buzzing with summer energy!

📅 Tip: Minneapolis nights stay light late in June, so there’s lots of time for evening plans! 🌇

👉 Learn more and register for the National Conference here https://www.firstskinfoundation.org/minneapolis-2026 💙

02/16/2026

This month at FIRST, we’re reminded that every story shared has the power to connect, educate, and inspire. We’re spotlighting a powerful first-person reflection from Marvin, who offers a heartfelt look at the emotional and physical realities of living with ichthyosis—proving that sometimes a picture truly is worth a thousand words. Through stories like Marvin’s, FIRST continues to deepen awareness, strengthen community, and advocate for everyone affected by ichthyosis and related skin types. Be sure to read more and share his journey.

We’re also celebrating the message that differences can be superpowers. In *Do You Know You’re a Superhero?*, FIRST mom Katie Keller follows Ms. Ella, who has epidermolytic ichthyosis with KRT2, on a day filled with kindness and courage. As Ella meets other kids with visible differences, she reminds them that what makes them different also makes them strong—encouraging every child to see themselves as a superhero.

Looking ahead, the FIRST Research Grant Program continues to fuel progress toward better treatments and, ultimately, cures. Researchers are invited to submit Letters of Intent by March 2, 2026, with invitations for full proposals to follow and award notifications by August 31, 2026. By supporting promising science and emerging ideas, this program remains a cornerstone of hope for the ichthyosis community.

Medical innovation is advancing at an unprecedented pace, but access to treatment depends on insurance coverage. We encourage you to watch a new video from the Alliance for Patient Access highlighting why patients with rare diseases must have access to the therapies developed for them.

Finally, FIRST is sharing information about a clinical research study evaluating an investigational topical ointment (ATR12-351) for adults with Netherton syndrome. This therapy uses a modified bacterial strain designed to produce a protein that is deficient in people with Netherton syndrome. Eligible adults (18+) without large open wounds may be able to participate. Learn more and help us spread the word about this important research opportunity.
https://conta.cc/4roj7Eu

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) FIRST's Grant Program, Rare Disease Coverage Exclusion     February 16, 2026 📸 A Picture Is Worth a Thousand Words — A Story from Mar

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.