October 30, 2026

Member Story

Meet Peggy: A Story of Hope and Support from Zambia

Meet Peggy, a 10-year-old girl from Zambia living with severe epidermolytic ichthyosis (EI). In her heartfelt story, Peggy shares the daily challenges of living with ichthyosis, including stigma, misunderstanding and missing out on everyday childhood activities. She also highlights the power of family, friendship and the global ichthyosis community in helping her navigate life with this rare skin condition. Read Peggy’s inspiring story and discover how connection, education, and support can make a difference.

Turning Stigma into Strength:

Dockuma Shares His Story

In a moving BBC Swahili feature, Dockuma, a French man of Malian origin who has lived with ichthyosis since birth, shares how stigma and misconceptions have often been more painful than the physical challenges of his condition. After experiencing hurtful stares, rejection and discrimination, Dockuma is now using social media to raise awareness, challenge misconceptions and encourage self-acceptance. His message is powerful: a person's worth is never defined by appearance. His story reminds us why education, empathy and greater understanding are essential to building a more inclusive world for everyone living with ichthyosis.

Read Dockuma’s story: BBC Swahili – Ichthyosis

Latest Research

and News

Skin Cancer Risk in

Congenital Ichthyosis

A new study is providing important insights into the potential risk of skin cancer in people with congenital ichthyosis. Using data from the NIH’s All of Us Research Program, researchers from Weill Cornell Medicine compared 198 people with congenital ichthyosis with more than 2,300 matched controls.

Read more here.

Help Advance Research in Women's Sexual Health

Researchers at Mayo Clinic are conducting an anonymous survey to better understand sexual health, sexual function, and quality of life among women with different types of ichthyosis or epidermal differentiation disorders.

🔗 Survey Link

Questions? Contact: Sanchez.mariajuliana@mayo.edu

Quoin Pharmaceuticals, Ltd. is developing a topical lotion for the treatment of Netherton Syndrome.

The company is actively recruiting for two clinical studies. People as young as 4 years old qualify, and there is an option to stay on systemic biologics.

Participants will be compensated for time and participation and reimbursed for travel, meals and lodging.

For more information about these studies please click here

If you would like to be considered for this exciting study, please take the Brief Survey here to see if you may pre-qualify. Based upon the information provided in the survey, if you pre-qualify, Quoin will contact you directly to discuss potential next steps.

Apply Today

Emerging Leaders

(Junior Board)

Applications due October 31st

Are you 16–25 years old and ready to make a difference in the ichthyosis community? The FIRST Emerging Leaders program gives young people the opportunity to build leadership skills, connect with peers, participate in advocacy, and help shape the future of FIRST.

Learn more about the FIRST Emerging Leaders program and how to apply.

Deadline - October 31st, 2026

Learn more

FIRST Physician Research Fellowship

Applications due

December 1, 2026

Advancing the Next Generation of Ichthyosis Specialists: FIRST Physician Research Fellowship

FIRST is investing in the future of ichthyosis care through its Physician Research Fellowship! This opportunity provides $75,000 annually, with the potential for a second year of funding, to support early-career dermatologists pursuing specialized clinical training and research in ichthyosis and other epidermal differentiation disorders. The 2026 application deadline is December 1, 2026.

Eligibility and Application

Upcoming Events

New Member Orientation

January 5, 2027 @ 5:00 pm

Please join FIRST CEO, Christopher Boynton for a live Zoom to learn more about the programs and services that FIRST has to offer. Register here.

Northwestern Ichthyosis Warm Up

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.

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.

Foundation for Ichthyosis & Related Skin Types (FIRST) | PO Box 1067 | Lansdale, PA 19446 US

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