Feel free to use this frame for your profile picture for the month of May!
#IAM24 #ichthyosis #raraedisease #SkinDisorder

New paper for #IAM2024 ! Memory, mood and brain structure in individuals with #Xlinkedichthyosis and #ichthyosis vulgaris: onlinelibrary.wiley.com/doi/10.1111/gb… ISG UK FIRST

Learn and share the facts about ichthyosis. Knowledge is power. firstskinfoundation.org/about-ichthyos…
#IAM24 #ichthyosis #raredisease #skindisorder

Join us in Dallas or on Zoom pre-SID mtg on 5/14 for the inaugural #Darier & #HaileyHailey Disease Symposium. Proud of the program we assembled w/The Green Lab Kowalczyk Lab incl scientists, clinicians & trialists to help move therapies💊 fwd for pts w/these NORD.

Happy Ichthyosis Awareness Month! Feel free to tag FIRST as we educate, inspire and connect all month long! #IAM24 #ichthyosis #RareDisease #SkinDisorder

Get read for #IAM24 and the National Conference. Check out our exclusive collection at bonfire.com/store/first-me… Don't miss out, get yours now! 🔥👕 #FIRSTmerch #NationalConference

Price increase is effective on May 1st. Register now! firstskinfoundation.org//albuquerque-2…

I see NORD #pemphigoid #Darier #HaileyHailey #ichthyosis #PPK having ZERO drugs FDA-approved➡️Rx denied by Medicare.gov as off-label. How can we help these patients? The RARE Act by Tammy Baldwin could help healourskin. FIRST PC Project haystackproject.org/protectrare

Delighted to be at #LATSS2024 @Lifearc with artist Andy Dakin and Dr Elena Giusto to showcase our Translational art collaboration showing the difficulties of life with severe ichthyosis. ISG UK Thanks to Dr Carleen Walsh and family. #rareskindisease #dermtwitter

Don't miss out on our premiere event, The National Conference. Register before the May 1st price increase. Can't wait to see you in Albuquerque! firstskinfoundation.org//albuquerque-2…
#ichthyosis #raredisease #skindisorder #conference

👋 Christopher Boynton and Jennie Wilklow Riley are on the Hill today asking Congress for more support and funding for dermatological research🌟 #DermatologyResearch #AccessToCare #Advocacy #CSDHillDay #ichthyosis

Join @car_uwe's survey on LGBTQIA+ youth with visible differences! Ages 15-24, LGBTQIA+ with a visible difference, inc #ichthyosis , share your thoughts in a 20-30 min survey. Chance to win £25 voucher! Scan QR code or click: go.uwe.ac.uk/LGBTQIAVisible… 🌈 #LGBTQIA #survey

Less than 2 mos until SID mtg. Join us pre-mtg (Tue 5/14 @ 2pm) for a FREE inaugural symposium on #Darier & #HaileyHailey disease organized by Simpson Lab @UWMedicine The Green Lab Kowalczyk Lab + fun group dinner w/another org for NORD PC Project:survey.alchemer.com/s3/7631963/202…

Why should you choose Camp Discovery for your child? firstskinfoundation.org/camp-discovery
#ichthyosis #AAD #skindisorder #skindisease

Thank you Timber Pharmaceuticals! On Rare Disease Day, Timber employees participated by wearing stripes and the company made a donation to FIRST! We are so grateful for your support.
#ichthyosis #raredisease #skindisorder

The first ever ichthyosis session, 'Think Like an Expert about Ichthyosis' meeting was so well attended at the #AAD2024 .
#educate #inspire #connect

Would you like to be notified of any research opportunities for your type of ichthyosis? Please join The National Registry for Ichthyosis and Related Disorders if you haven't done so already. firstskinfoundation.org/national-regis…
#ichthyosis #raredisease #skindisorder #research

Today, Chris Boynton and Denise Gass are headed to the American Academy of Dermatology meeting in San Diego, CA. For the first time ever, there will be a 'Think Like an Expert about Ichthyosis'. Stay tuned for more updates.
#ichthyosis #raredisease #skindisorder