Foundation for Ichthyosis & Related Skin Types, Inc.

06/08/2026

🚨 Last-Minute Opportunity! 🚨
Thinking about joining us at the 2026 FIRST National Conference in Minneapolis? Now is your chance!

A limited number of king hotel rooms have just become available at the conference hotel, the Hyatt Regency Minneapolis. If you thought you missed out, check again and secure your spot before these rooms are gone. The conference takes place June 26–28 and brings together individuals, families, healthcare professionals, researchers, and industry partners from across the ichthyosis community for a weekend of connection, education, support, and inspiration.

Don't miss this incredible opportunity to connect with others who truly understand the journey.

🤝 Meaningful community connections
📚 Educational sessions and resources
💙 A weekend of support, hope, and belonging

Reserve your room and learn more today:
https://firstskinfoundation.org/2026-national-conference/

06/01/2026

Read about Nethra's story which highlights the challenges faced by those with ichthyosis. Anna's story speaks about fostering inclusive beauty experiences for children. Learn more about our new Physician Finder tool, financial aid applications, and upcoming events designed to support families. Together, we can create a positive impact.

Email from Foundation for Ichthyosis & Related Skin Types (FIRST) Financial Aid - Skin Care and Air Conditioners, Physician Finder     June 1, 2026 Member Story - Nethra, India Born with Lamellar ich

05/31/2026

As Ichthyosis Awareness Month comes to a close, we want to say THANK YOU. 💙

Thank you to everyone who shared a story, wore blue, educated others, donated, advocated, participated in events or simply helped start a conversation about ichthyosis. Every act of awareness matters.

While May may be ending, the work continues all year long. Each time awareness is raised, it makes the journey a little easier for someone in our community, helping people feel seen, understood, supported and less alone.

We are deeply grateful for this incredible community, including individuals and families affected by ichthyosis, physicians, researchers and our industry partners. Together, we continue to drive awareness, support, research and hope forward.

Thank you for standing with us this month and every month. 💙

05/28/2026

Planning a little extra fun around the national conference in Minneapolis? 🌹🎆

Check out the annual Rosefest celebration in nearby Roseville, Minnesota. It's a week-long community festival featuring parades, fireworks, live music, family activities, food events, and more! It’s a great option to explore before or after conference sessions with friends, family, or fellow attendees.

Highlights include:
✨ Rose Parade
✨ Taste of Rosefest
✨ Party in the Park & Fireworks
✨ Run for the Roses
✨ Live entertainment and family fun all week long

Rosefest 2026 takes place June 22–28 in Roseville, just minutes from Minneapolis.

Learn more and view the full schedule here:
https://cityofroseville.com/2564/Rosefest

05/27/2026

☀️ Staying cool isn’t just about comfort, it can be essential for those living with ichthyosis.

Applications are now being accepted for the Weary Air Conditioner Fund, which helps provide window air conditioning units to individuals with ichthyosis who do not have access to them. This special fund was created to help affected individuals stay safer and more comfortable during warm weather. Applications are reviewed based on eligibility and financial need.

📅 Don’t wait, apply today or share with someone who may benefit.

Learn more and apply here: https://firstskinfoundation.org/news-articles/applications-now-accepted-for-weary-air-conditioner-fund/

05/25/2026

This is what excites us most: this is just the beginning.

This site is going to grow with you and you are going to make it stronger. For example, when you find an ophthalmologist who truly understands ichthyosis, you'll soon be able to share that doctor with every other family who needs one. The knowledge this community holds is extraordinary, and we are building the infrastructure to set it free.

This is your community. This is your site. We can’t wait to continue to grow it together! www.FirstSkinFoundation.org

05/22/2026

Uncertainty is something we all face, but for individuals living with serious health conditions and their caregivers, it can feel especially overwhelming. This session will explore why uncertainty weighs so heavily on our mental and emotional wellbeing, and provide practical strategies to manage stress, worry, and fear. Attendees will gain tools to sharpen self-awareness, cope with intense emotions, and create sustainable practices for resilience. In recognition of Mental Health Awareness Month, this webinar will highlight realistic ways to find calm, stay grounded, and build stability in the midst of change.

May 27, 2026

10am PT / 12pm CT / 1pm ET
Duration: 90 minutes
https://triagecancer.org/webinarreg-coping-with-stress

05/19/2026

Our FIRST advocates are on Capitol Hill today to speak up for individuals and families affected by ichthyosis and related skin conditions.

Every conversation matters. Every story shared helps build understanding, increase awareness, and move us closer to meaningful change. We are proud of our community members who are using their voices to represent those living with rare skin conditions and to help ensure patients and families are heard.

Thank you to each advocate taking time to educate, connect, and champion the needs of our community. We’re cheering you on every step of the way.

Together, we are creating a stronger future for everyone impacted by ichthyosis.

05/19/2026

💙 During Ichthyosis Awareness Month, we are reminded that progress happens when we come together. 💙

The ichthyosis community is stronger because of the people who stand side by side every day, individuals and families affected by ichthyosis, dedicated physicians, passionate researchers, and committed industry partners. Together, we are raising awareness, advancing research, improving care, and building hope for the future.

No one takes this journey alone. Every shared story, every study, every appointment and every partnership helps move us forward.

This month, and every month, we stand united. Because together, we can create change.