Foundation for Ichthyosis & Related Skin Types, Inc.

04/03/2026

We’re helping Quoin Pharmaceuticals on the next round of videos for their Netherton NOW campaign and we’re looking for individuals living with Netherton Syndrome who are willing to share their story.

Filming will take place in Philadelphia on May 20, and this is a powerful opportunity to help raise awareness and amplify the Netherton community’s voice.

We’re incredibly proud that the campaign has already reached over 24 million impressions and more than 2 million video views—and we’re just getting started.

If you or someone in your network may be interested, please reach out to Denise Gass at dgass@firstskinfoundation.org to learn more.

Let’s continue to make an impact together 💙

04/03/2026

https://www.cnbc.com/video/2026/03/20/how-families-are-defying-rare-disease-cnbc-full-documentary.html

CNBC’s Becky Quick steps out from behind the anchor desk to share her family’s private battle with her daughter’s rare disease. Through her story and others like it, Quick reveals the stark reality of patients caught between groundbreaking science and the persistent gaps in funding, access and...

04/02/2026

Our community knows best when it comes to finding compassionate, knowledgeable specialists—and we want to hear from YOU.

Do you have a dermatologist or healthcare provider who truly understands ichthyosis and has made a difference in your care? Please share their information here https://wl.donorperfect.net/weblink/WebLink.aspx?name=first&id=252

We’re working to expand our Physician Locator tool so families and individuals can more easily find trusted care near them. Your recommendations can make a real impact for someone else navigating this journey.

Thank you for helping strengthen our community—one connection at a time 💙

04/02/2026

The Coalition of Skin Diseases had their annual Membership Development Day and meeting this past weekend.

Chris Boynton was proud to stand alongside partners who share a commitment to strengthening advocacy, raising awareness, and advancing research across the skin disease community. The energy and collaboration in the room were truly powerful.

We’re grateful for these meaningful partnerships and look forward to continuing this important work—together.

03/31/2026

Important FIRST Financial Aid deadlines and so much more. Click on link in bio

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Clinical Trials and Social Media Listening     March 31, 2026 Ichthyosis Tips Living with Ichthyosis can feel overwhelming—but having

03/31/2026

🚨 LAST CALL! 🚨

UFIRST applications are due TODAY! Don’t miss your chance to take part in this incredible opportunity designed to empower and support individuals in our community.

If you’ve been thinking about applying, now is the time—submit your application before the midnight! ⏰

👉 https://www.firstskinfoundation.org/ufirst

03/30/2026

💙 Living with ichthyosis isn’t just physical—it can impact emotional and mental well-being, too. And you don’t have to navigate that alone.

The Foundation for Ichthyosis & Related Skin Types (FIRST) offers a dedicated **Mental Health Resource Library** filled with tools, articles, personal stories, and support options designed specifically for our community. From coping strategies to crisis resources like the **988 Lifeline**, help is always within reach.

Whether you’re looking for guidance, connection, or just reassurance that someone understands—these resources are here for you.

👉 Explore support: [https://www.firstskinfoundation.org/mental-health]



[1]: https://www.firstskinfoundation.org/mental-health-and-ichthyosis-resource-library?utm_source=chatgpt.com "Ichthyosis Resources | Mental Health | Foundation for Ichthyosis & Related Skin Types (FIRST)"

03/23/2026

🎓 Dream Big with UFIRST Scholars! March 31st Deadline

Are you living with ichthyosis or a related skin type and pursuing higher education? The UFIRST Scholars Program from FIRST is here to support YOU on your journey!

💡 This incredible program helps students achieve their educational goals by providing financial assistance for college, graduate school, or vocational training. Since its launch, UFIRST has awarded over $262,000 to students working toward their dreams.

📣 Applications for the Spring 2026 cycle are now open!
If you’re ready to take the next step in your education, don’t miss this opportunity.

✨ Who can apply?
✔️ Individuals affected by ichthyosis or related skin types
✔️ Students pursuing post-secondary, graduate, or trade education
✔️ Passionate advocates ready to make an impact

💙 Your story, your resilience, your future—this scholarship is for YOU.

🔗 Learn more & apply today: https://www.firstskinfoundation.org/ufirst

03/20/2026

EXCITING NEWS!

Good News! Phase 3 Setback for TMB-001 (Ascend Trial)

Spurs Hopeful Out-Licensing of Vehicle in Congenital Ichthyosis

A Phase 3 trial of TMB-001, a topical isotretinoin treatment for congenital ichthyosis, did not meet its primary endpoint. However, unexpected improvement seen in patients using the vehicle ointment alone has prompted plans to make the formulation more widely available to help manage symptoms. Read more here https://www.firstskinfoundation.org/news/phase-3-setback-for-tmb-001-spurs-hopeful-out-licensing-of-vehicle-in-congenital-ichthyosis

03/19/2026

New Netherton Study-including international locations
A clinical research study for adults and adolescents living with Netherton syndrome.
Netherton syndrome is a rare, inherited condition characterized by severe skin problems, abnormal hair growth, and an increased risk of developing allergies and asthma. Currently, there are no approved treatments for Netherton syndrome.
The clinical research study (BCX17725-101) is looking at whether an investigational medicine called BCX17725 might be a potential treatment for people with Netherton syndrome. “Investigational” means that the FDA and other health authorities have not approved the medicine to be given to patients, except in clinical studies.
What is BCX17725?
BCX17725 is not a cure but aims to improve the symptoms of Netherton syndrome.
About the BCX17725-101 Study
BioCryst Pharmaceuticals is sponsoring this study.
The study is designed to determine how safe BCX17725 is, if it works, and how the body handles taking it.
If you or someone you are caring for want to participate in this study, you/they must:
· Be 12 to 65 years of age
· Have a diagnosis of Netherton syndrome
· If female, not be pregnant or nursing a child
· Be willing to stop some other medications before and during the study
· Available to complete the entire study and willing to comply with the study tests and procedures
The study is currently enrolling participants in the USA, the Netherlands, Germany, France, and Australia.
What will happen during the BCX17725-101 study
The study will last about 5 to 6 months in total. All eligible participants will receive BCX17725 for 12 weeks, followed by an 8-week off-treatment observation period. The drug may be given as an intravenous infusion (directly into a vein) and/or by subcutaneous injection (under the skin). Approximately 12 adults and teenagers with Netherton syndrome are expected to take part in the study.
Participating in research is voluntary. You are under no obligation to participate, and you may choose to withdraw at any time without affecting your current or future medical care. The study team will explain the possible risks and benefits of the study. Reasonable travel costs will be covered or reimbursed.
How do I get more information?
If you think you may be interested in participating in the study, please contact a participating study center to learn more about this clinical study. Contact information for participating study centers can be found at https://clinicaltrials.gov/study/NCT06539507 (refer to study part 4).

03/19/2026

📣 We want to Welcome you to Minneapolis! 🌞✨

Longtime Minneapolis resident and FIRST community member Sarah Aughenbaugh is excited to welcome everyone to the city she and her family have proudly called home for more than 16 years. From beautiful lakes and a vibrant arts scene to a strong sense of community that reflects the spirit of FIRST, Minneapolis shines, especially in summer. 💛

As the snow melts and days grow longer, we’re counting down to FIRST’s National Conference 2026! Within steps of downtown and the conference hotel, you’ll find endless things to see and do:

🌊 The lively Chain of Lakes
🎶 Mill City Farmers Market with live music
🍽️ Rooftop patios buzzing with summer energy
🎭 A renowned arts and culture scene-from First Avenue to the Guthrie, Walker Art Center & Sculpture Garden

Planning to extend your stay? Explore the best of Minnesota:

🎤 Visit Prince’s Paisley Park
🛍️ Shop at Mall of America
🏞️ Discover the Mississippi headwaters at Itasca State Park
⚾ Catch a game with one of our home teams

Every two years, FIRST’s National Conference brings together the ichthyosis community to connect, share, and support one another-upholding our core values of compassion, hope, integrity, and responsiveness.

We can’t wait to welcome this incredible community to our beautiful, vibrant city. See you this summer in Minneapolis! 💙✨https://www.firstskinfoundation.org/minneapolis-2026

03/18/2026

📣 Help Advance Ichthyosis Research - Join the Registry

The National Registry for Ichthyosis and Related Skin Types is a powerful way for individuals and families affected by ichthyosis to contribute to research that can lead to better treatments and one day, cures. By joining the registry, participants help researchers better understand different types of ichthyosis and may even have the opportunity to receive a free genetic diagnosis and be notified about relevant research studies or clinical trials.

Your experience matters. The information shared through the registry helps scientists and clinicians worldwide gain critical insights into these rare conditions and move the field forward.

👉 Learn more and enroll today:
🔗 https://www.firstskinfoundation.org/ichthyosis-registry

Together, we can accelerate research and improve the future for everyone living with ichthyosis. 💙