Foundation for Ichthyosis & Related Skin Types, Inc.

04/28/2026

Camp Wonder is more than just a summer camp, it’s a place where kids with ichthyosis can be themselves, build confidence, and create lifelong friendships. 💙

From outdoor adventures to unforgettable memories, Camp Wonder gives children the chance to experience the joy of camp in a supportive, understanding environment designed just for them.

Spots fill quickly so don’t miss the opportunity to be part of something truly special. Learn more and apply today!

https://www.csdf.org/sign-up

04/24/2026

📅National Conference Program at a Glance!

We’re excited to share a sneak peek of what’s ahead at this year’s conference! From inspiring keynote speakers and the latest research updates to practical care sessions, community discussions, and fun daycare, there’s something for everyone in our ichthyosis community.

Whether you’re planning your schedule or just getting excited for what’s to come, the Program at a Glance makes it easy to see all the opportunities to learn, connect and be inspired.

https://www.firstskinfoundation.org/minneapolis-program-at-a-glance

✨ Highlights include:
• Expert-led educational sessions
• Patient and family discussions
• Research and treatment updates
• Interactive community groups
• Optional activities and a fun Saturday night

We can’t wait to come together, share knowledge, and strengthen our community.

Stay tuned and start planning your experience! 💙

04/23/2026

On May 1st we will celebrate the start of Ichthyosis Awareness Month 💙

Every day, individuals and families in our community navigate life with ichthyosis, a group of rare skin conditions that go far beyond what meets the eye. From managing daily care routines to facing social and emotional challenges, their strength and resilience deserve to be seen, heard, and supported.

This month, we’re raising awareness, sharing stories, and building understanding. You can help by:
✨ Learning more about ichthyosis
✨ Listening to and promoting patient voices
✨ Supporting organizations, like FIRST, working toward better treatments and care

Together, we can make a difference: one story, one conversation, one act of awareness at a time.

04/20/2026

Miss Matched Movie Premiere
Be among the first to see the first film featuring ichthyosis — May 9 in Philly —

Miss Matched is complete and will be screening at the FirstGlance Philadelphia Film Festival on: Saturday, May 9 at 7:30 PM in downtown Philly!

This is more than a film—it’s a milestone for our community.

🎟️ Buy a ticket https://prod5.agileticketing.net/websales/pages/info.aspx?evtinfo=484806~6728ed3e-dade-4087-9fc1-a95f5c0f83a1&epguid=bec7cf09-82c3-49d2-994b-307df9186dca&mdy=5/9/2026& and attend the screening + Q&A ($20*) -- select Sat. 5/9 @7:30pm.
🗳️ Vote for Miss Matched and show your support at the festival
💌 Invite friends, family, and colleagues to join you

Watch the trailer and read more** → www.missmatchedmovie.com

** If you have questions or concerns about the content or age-appropriateness of the film, please reach out info@missmatchedmovie.com. We anticipate a PG-13 rating for mild language and adult themes. There is NO nudity, violence, or drug use in the film.

04/15/2026

Get ready—time is running out! 🎉 Don’t miss your chance to be part of the most anticipated event of the year hosted by Foundation for Ichthyosis & Related Skin Types!

**⏰ The countdown is on for FIRST’s National Conference!**
Join patients, families, medical experts, advocates and industry from across the world for an unforgettable experience filled with education, empowerment, and community. From groundbreaking research updates to life-changing connections, this is where hope and progress come together.

✨ **Why You Can’t Miss It:**

* Expert-led sessions on the latest in ichthyosis care and research
* Inspiring stories and meaningful peer connections
* Hands-on workshops and valuable resources
* A supportive community that truly understands

🚨 **Register now before it’s too late!**
Secure your place today and be part of a weekend that informs, inspires, and uplifts.

https://www.firstskinfoundation.org/minneapolis-2026

04/14/2026

Every ichthyosis story matters 💙✨

Your journey, challenges, milestones, and little victories can help another member feel seen and less alone. We’d love to feature more voices from our community in an upcoming edition of eNews!

Please send your photo and your story about your experience living with ichthyosis to cwassel@firstskinfoundation.org 📸📝

Whether you’d like to share a lifelong journey, a recent diagnosis, advice that has helped, or a moment of hope, we want to hear from you. Your story could make a real difference to another family in the FIRST Skin Foundation community 💛

04/11/2026

If you have read this wonderful book, please consider writing a review on Amazon. According to Tina Thomas "Reviews bring the book to the attention of publishers"

https://www.amazon.com/Unexpected-Adoption-Girl-Behind-Face/dp/9811781222

04/10/2026

Chronic skin disease is more than what we see—it’s deeply connected to what patients feel.

New insights highlight the powerful link between inflammation, stress, and emotional well-being. Conditions like eczema, psoriasis, and acne don’t just affect the skin—they can trigger a cycle where psychological stress worsens inflammation, and inflammation fuels emotional distress.

This mind-skin connection reminds us that care must go beyond symptoms. Supporting mental health, reducing stress, and truly listening to patients are essential parts of treatment—not extras.

Because treating skin means caring for the whole person. 💙

https://www.firstskinfoundation.org/news/social-media-listening-in-congenital-ichthyosis-quantitative-and-qualitative-findings

04/08/2026

Chronic skin disease isn’t just physical—it’s emotional. 💙

New insights from Dermatology Times highlight how the lack of a clear “finish line” in conditions like eczema, psoriasis, and acne can drive ongoing anxiety and distress.

The message is clear: treating skin means treating the whole person. Empathy, connection, and truly listening can be just as powerful as any prescription.

https://www.firstskinfoundation.org/news/skin-and-psych-chronic-inflammation-and-the-emotional-toll

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 💙