From June 26–28, 2026, the FIRST community came together in Minneapolis, Minnesota, for an unforgettable National Conference. It was three extraordinary days filled with education, inspiration, laughter, and lifelong connections.
Families, adults living with ichthyosis and related skin disorders, caregivers, researchers, healthcare professionals, and industry partners gathered from across the country and around the world to learn from one another, share experiences, and celebrate the strength of our rare disease community.
Throughout the weekend, attendees participated in educational sessions led by leading experts, engaged in meaningful discussions, explored the latest research developments, and discovered valuable resources to help them navigate life with ichthyosis. Just as importantly, they found something that cannot be replicated anywhere else, the opportunity to connect with people who truly understand their journey.
One of the conference’s most memorable highlights was the incredible keynote presentation by Portia Cina. Her powerful story of resilience, authenticity, and determination inspired attendees of all ages, leaving the audience motivated to embrace their own unique journeys with confidence and hope.
Adding energy and excitement throughout the weekend was our outstanding emcee and entertainer, Jeff Civillico. Jeff’s humor, warmth, and engaging personality kept the conference energized from beginning to end. His ability to bring people together through laughter created countless memorable moments and perfectly captured the welcoming spirit of the FIRST community.
FIRST provided attendees with opportunities to meet representatives from organizations committed to advancing treatments and improving the lives of those affected by ichthyosis. FIRST extends its sincere appreciation to our generous conference sponsors: Beiersdorf, BioCryst, Quoin, and Azitra for their partnership and unwavering support. Their commitment to research, innovation, education, and the rare disease community helped make this exceptional event possible. In addition, members stopped by the displays for Chemistry Rx and The Bhakti Brain Clinic where they learned about compounding products for ichthyosis and neuromodulation.
For many attendees, the National Conference was more than an educational event, it was life changing. New friendships were formed, families discovered they were not alone, children met others who looked like them for the very first time, and adults found renewed confidence, encouragement, and hope for the future. The Saturday Night dinner, Jeff Civillico’s entertainment and dance party with live music and a DJ ended the conference on a thrilling note.
Weekends like this remind us why FIRST exists: to build community, advance research, provide trusted education, and ensure that no one affected by ichthyosis or a related skin disorder walks their journey alone.
To every attendee, volunteer, speaker, exhibitor, sponsor, and supporter who made the 2026 FIRST National Conference such an overwhelming success. FIRST thanks you. Together, we continue to build a stronger, more connected future for the entire ichthyosis community.
We look forward to seeing you at our next FIRST event! Look for one day patient meetings in 2027.
