🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Educate your community, workplace or school with electronic versions of FIRST's Ichthyosis Focus firstskinfoundation.org/ichthyosis-foc… #IAM25 #raredisease #skindisorder #ichthyosis

FIRST has a wealth of educational, inspirational and exercise videos for those with ichthyosis. Educate yourself and you community with our library of videos. You can search for a topic too. youtube.com/@firstskinfoun… #ichthyosis #raredisease #skindisorder #iam25

Whether you are looking for information for a newborn, teen, adult or senior, use the search box on our homepage to help you find the info quickly! #skindisorder #ichthyosis #raredisease #IAM25

The registry can provide a free genetic diagnosis for most individuals, and can notify affected individuals and families of new opportunities to participate in research and clinical trials if requested. Learn more here firstskinfoundation.org/ichthyosis-reg…

Whether you are newly diagnosed or have been living with it for many years, there are may tips here firstskinfoundation.org/tools-tips-for… #ichthyosis #raredisease #skindisorder

FIRST has put together a very knowledgable Medical & Scientific Advisory Board to provide guidance and expertise to Staff and members. We are so grateful! firstskinfoundation.org/medical-scient… #IAM2025 #raredisease #skindisorder #ichthyosis

Is FIRST in your estate plans? Let us know so we can say thank you! freewill.com/record/first

Chris Boynton, along with FIRST members Fulvia Veronese (Board Member), Laura Hogan, Jennie Wilklow-Riley and Angela Lowry-Sellers are advocating for ichthyosis on Capitol Hill. The Coalition of Skin Diseases combines voices of many skin organization to create a stronger message.

Our first, one day meeting for 2025 was a tremendous success in Austin, TX. Don't miss our other locations this year. We'd love to see you! firstskinfoundation.org/patient-suppor…

FIRST members helped to create and collate wonderful mental health resources. Whether you need them today, or years from now, you can find them here firstskinfoundation.org/mental-health #ichthyosis #raredisease #skindisorder

Due to the generosity of Beiersdorf, the maker of Eucerin and Aquaphor, there are additional funds available for our FIRST-Aid Fund this year! Please submit your application by July 31st firstskinfoundation.org/first-aid #ichthyosis #raredisease #skindisorder #AquaphorUS #EucerinUS

Using the UK Biobank, they discovered an unexpected association between Xp22.31 micro-deletions encompassing STS and a substantially increased risk of developing Atrial Fibrillation/Flutter. Read more firstskinfoundation.org/news/the-impor… #raredisease #skindisorder #XLI

If you or a loved one was recently diagnosed, or you are in need of additional information, FIRST has a wealth of resources to help firstskinfoundation.org/newly-diagnosed #raredisease #skindisorder #ichthyosis

If you are in the area of Livonia, MI, please come out and support FIRST at the Schlitt and Goff families' 3rd annual Cornhole Tournament on September 6th. It's a fun day and you'll meet other members with ichthyosis. firstskinfoundation.org/events/09-06-2…

Due to the generosity of Beiersdorf, the maker of Eucerin and Aquaphor, there are additional funds available for our FIRST-Aid Fund this year! Please submit your application by July 31st firstskinfoundation.org/first-aid #ichthyosis #raredisease #skindisorder #AquaphorUS #EucerinUS

We posed this question to our FIRST ichthyosis community and they responded! #raredisease #skindisorder #ichthyosis

FIRST's next three, one-day meet-ups have been scheduled. Won't you join us for connections, information, research and great conversation? Click here and scroll down on the right to register. firstskinfoundation.org/news-events #ichthyosis #raredisease #skindisorder #meetup

We asked our FIRST community "What is your greatest hope for the future of life with ichthyosis?" Here is what they had to say. #ichthyosis #raredisease #skindisorder #Research

For adults affected with ichthyosis, what are your biggest concerns as you age? Please reply in the comments, so that we can continue to create resources for you. #ichthyosis #raredisease #skindisorder

NORD’s State Resource Center contains information on organizations that offer free or low-cost programs and services for individuals impacted by rare disease. rarediseases.org/state-resource…