Member Story -

Bako Bakhtyar Majeed, Iraq

Born and raised in Sulaymaniyah, Iraq, Bako has lived with generalized ichthyosis since birth. Without access to specialized dermatological care or essential medical resources, managing the condition, especially in the region’s hot, dry climate, has been a daily challenge. Four years later, Bako’s younger brother was also diagnosed, bringing new challenges but also strengthening their family’s resilience. Read more here.

Looking Into the Future of Ichthyosis Research

What does the future hold for ichthyosis research? At FIRST’s 2026 National Conference in Minneapolis, MN, Dr. Amy Paller and Dr. Keith Choate, along with members of their research teams, shared an inside look at where ichthyosis research is headed.

The presentation explored emerging areas of research, new discoveries and the work underway to better understand ichthyosis and develop improved treatments. Whether you’re a patient, family member, or simply interested in the future of ichthyosis research, this presentation offers an exciting look at what’s ahead.

Watch “Looking into the Future of Research” on the FIRST's website and learn more about the research shaping the future of ichthyosis care.

News

New Study Offers Clues About Inflammation in

Congenital Ichthyosis

Researchers are gaining a better understanding of why inflammation occurs in people with congenital ichthyosis. A new study provides clues about the biological pathways involved, helping researchers better understand how changes in the skin barrier may contribute to ongoing inflammation. While more research is needed, these findings could help guide future research into more targeted treatments for ichthyosis. Read more here.

Rare Belongs in Every Room:

The Story Behind SKINRARE

What began as a vision to create a welcoming space for people with rare, chronic, and visible skin conditions grew into an inspiring afternoon of connection, learning, and community.

Founded by ichthyosis advocate and FIRST member Eileen Uthuppan, SKINRARE brought together patients, burn survivors, healthcare professionals, students, creators, founders and allies to explore the shared experiences that unite skin condition communities. Through powerful panel discussions, participants shared personal journeys, discussed the future of patient-centered care and inclusive skincare, and highlighted the importance of representation and visibility. Read more here.

Understanding

Symptoms & Complications

Ichthyosis can affect more than the skin itself and certain situations can bring unique challenges. FIRST’s Symptoms & Complications resources provide practical information on issues including itching, overheating, skin infections, scalp scale, broken bones and more.

Whether you’re living with ichthyosis, caring for a child, or supporting someone in the community, these resources offer helpful information to better understand potential complications and ways to navigate them.

Explore FIRST’s Symptoms & Complications resources here.

In Memory of Rose Ann Ames

When someone we love passes away, families sometimes choose to honor their memory by inviting friends and loved ones to make a donation to a cause that was meaningful to them.

Rose Ann Ames was one of those people. She often gave to FIRST in memory of friends and loved ones, and her connection to FIRST grew from her beloved granddaughter, Olivia, who lives with SLS.

In Rose’s obituary, her family shared that donations could be made to FIRST in her memory. This is such a meaningful way for those who knew and loved her to carry forward something that mattered deeply to her.

We are grateful to Rose and her family for allowing FIRST to be part of her story, and we extend our heartfelt sympathy to everyone who is mourning her loss. ❤️

If you'd like to donate in honor or memory of someone, please contact Lisa at lbreuning@firstskinfoundation.org

Upcoming Events

Northwestern Warm Up February 27, 2027

Chicago Area Members

Ichthyosis Winter Warm-Up at Northwestern

Families, friends, and individuals living with ichthyosis are invited to gather for an afternoon of connection, learning, and support at the Ichthyosis Winter Warm-Up at Northwestern on February 27, 2027, hosted by Dr. Amy Paller and the Northwestern/Lurie Children’s team.

The event will feature networking, lunch, research and treatment updates, entertainment, discussion groups, and plenty of opportunities to connect with others in the ichthyosis community. Discounted parking will be covered, and attendees will have the chance to explore products, discover new treatment ideas, and share experiences with fellow families.

Date: February 27, 2027

Time: 12:15 PM to 4:30 PM

Location: Lurie Children’s, Chicago, IL

RSVP: Contact Giuliana Wells at giuliana.wells@nm.org to reserve your spot.