Foundation for Ichthyosis & Related Skin Types, Inc.

11/18/2025

Take a listen to Allie and Kaleigh's story about living with Netherton Syndrome. https://www.youtube.com/watch?v=JRvibiNnpTc

11/18/2025

Health insurance is changing… are you ready? All are welcome to join NORD on November 19 at 2:00 p.m. EST for a webinar to help members of the rare disease community understand what to look for during open enrollment. We will provide tips for choosing the right health plan so you can keep getting the care and medicines you need.

Register Today https://rarediseases.zoom.us/webinar/register/WN_spnUNzq9SrimzpI8hm5aig #/registration

11/17/2025

Here's your chance to grab some MicrodermaMitt Products. They are having a 50% off sale of their entire website through November 30th! https://microdermamitt.com/
Use code BLACKFRIDAY50

11/17/2025

🌟 Get ready to explore Minneapolis! 🌟

While you’re here for the 2026 FIRST National Conference, take some time to discover everything this vibrant city has to offer! From art and adventure to nature and nightlife — Minneapolis has it all. 🏙️✨

🎨 Culture & Creativity
🖼️ The James J. Fiorentino Museum – stunning sports and wildlife art
🔥 Portal° Thermaculture – a one-of-a-kind wellness experience
🎭 Open Eye Figure Theatre – imaginative and inspiring performances

🛍️ Shop & Stroll
🪶 Ancient Traders Market – Indigenous art, jewelry & gifts
🏬 Mall of America – shop, dine, and play at one of the largest malls in the U.S.
🕰️ Antiquified – vintage finds and local treasures

🌿 Nature & Outdoors
🌸 Roberts Bird Sanctuary – a peaceful escape for bird lovers
🌊 Webber Park – Minneapolis’ natural swimming pool
🌳 Fairview Park – a great spot for a stroll or picnic

🍷 Food & Fun
🍺 Grain Belt Brew House – taste a piece of Minneapolis history
🍇 AxeBridge Wine Company – local wines in the heart of the North Loop
🧗‍♂️ Vertical Endeavors – climb your way to adventure
💡 Sky Pesher – a hidden gem art installation by James Turrell

Whether you’re into art, nature, shopping, or good food — there’s something for everyone in Minneapolis! ❤️

📍 Join us June 26–28, 2026 for the FIRST National Conference — and make time to explore this amazing city!

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

11/17/2025

🌟 It's time to apply for FIRST-Aid🌟

Living with ichthyosis can bring emotional, physical, and financial challenges. That’s why we are reminding you to apply to FIRST-Aid, a program designed to provide support for skin care needs to those affected by ichthyosis.

➡️ Who is Eligible?
If you or a loved one has ichthyosis or a related skin type, you may qualify to receive a grant to help with skin care expenses https://www.firstskinfoundation.org/first-aid

➡️ Key Requirements Include:

Be a FIRST member prior to applying

Demonstrate financial need

Provide documentation of skin care expenses

Submit a testimonial (anonymous is okay)

🗓️ Application deadline is January 31st
https://www.firstskinfoundation.org/first-aid

💡 How to Apply or Support

Fill out the FIRST-Aid Skin Care Fund Application via the link on our site.

If you’d like to see more people helped, consider donating to the FIRST-Aid fund — every bit helps make relief possible.

Let’s ensure that no one has to choose between caring for their skin and caring for their finances. 💙

🔗 Learn more / Apply: firstskinfoundation.org/first-aid
📩 Questions? Email us at info@firstskinfoundation.org

11/15/2025

Taryn's story highlights the importance of awareness and advocacy for ichthyosis care. Our recent fundraising event raised over $4,145, showcasing community support. We also celebrate Quoin's QRX003 receiving FDA Orphan Drug Status for Netherton Syndrome, a significant advancement in treatment. Join us in our efforts to improve care for those affected by ichthyosis.

https://conta.cc/3JVrcjx

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Research and Financial Aid Funds, Conference Early-bird Pricing       November 15 , 2025 Member Story - Taryn, Canada  Our family was

11/14/2025

Here are some tips from FIRST members for preparing for the cold winter months with ichthyosis.

11/11/2025

🎉 Early Bird Alert! 🎉
Don’t miss your chance to save: Early bird registration for the conference happening June 26-28, 2026 in Minneapolis ends November 30, 2025.

👉 What you get:

Full conference access + several meals during the weekend.

Special early bird rates: Adults (13+) $450 | Children (4-12) $175 | Pre-K (1-3) $50.

A chance to connect with others who understand the ichthyosis journey, learn from experts, and build community.

📍 Location: Hyatt Regency Minneapolis, 1300 Nicollet Mall, Minneapolis, MN.

🗓 Dates: June 26-28, 2026.

🌟 Early bird deadline: November 30, 2025 — after that, rates go up.

🔗 Register now: firstskinfoundation.org/minneapolis-2026

🔔 Tag someone who shouldn’t miss this & share to spread the word!

11/07/2025

✨ We are proud to share that thanks to the generosity of Beiersdorf —the makers of Eucerin and Aquaphor—we are able to offer the FIRST‑Aid Skin Care Fund through FIRST to support individuals living with ichthyosis and related skin conditions. 🙏

This program provides meaningful financial aid just when it’s needed most—helping with skincare needs and easing the burden of managing a chronic skin condition. Learn more or apply today via the link in our bio. Together, we’re making skin care more accessible. Thank you, Beiersdorf! 💙

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

11/05/2025

Are you ready to advocate for those with ichthyosis and related skin types? Apply for a travel scholarship for Rare Disease Week on Capitol Hill http://bit.ly/439p5Px

11/03/2025

Looking for funding for your research? PeDRA is accepting applications for their Grants and Fellowships Program. Apply for the

🔬 2025 Pediatric Ichthyosis Challenge Grant (in partnership from FIRST)

These opportunities reflect PeDRA's commitment to supporting researchers and accelerating progress toward better treatments and cures for children with skin diseases.

📅 Applications are due December 4, 2025.

https://pedraresearch.org/pediatric-ichthyosis-challenge-grant/

10/31/2025

Here's what's new in ichthyosis https://conta.cc/3Lphc2h

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Aging and Ichthyosis and Itch Scratch Cycle       October 31, 2025 Member - Eileen "After discovering the Foundation for Ichthyosis an