“EB has affected every aspect of my life. You’ve probably only seen me smiling and happy but very often, now that I’m getting older, I feel more broken and helpless against this condition which, unless people do great things, will take my life.” - Sohana youtu.be/45jXP5GSgw4

Yes it’s true, every New Years Day... 😍

#BradleyCooper joined us at our #VentureIntoCures digital event to explain the massive impact EB research can have for both people living with EB and the 400M people worldwide that live with a #raredisease. Watch the full show at bit.ly/35dcc8Y

FOUR Phase 3 #clinicaltrials in EB are ongoing today! #Phase3 is the last phase of trial before U.S. FDA considers approval of a therapy; we're closer to an available EB treatment than ever before. Learn more about EB clinical trials at ebresearch.org/clinical-trials 🧪🧬🔬

Brush up on your Epidermolysis Bullosa knowledge with this handy infographic introducing you to EB. For more information, visit our website.🦋 cure-eb.org #MondayMotivation #charity #cureEB

📢 NEW! The official #RareDiseaseDay video is out NOW 🎉Watch the 6 real life stories and be inspired to join the 2021 campaign. 👥 Share this post with your followers using this hashtag #RareDiseaseDay

📅 Today is #RareDiseaseDay 2021, the rarest day of the year! How are you raising awareness for people living with a rare disease and their families?

4⃣5⃣0⃣ buildings and monuments worldwide lit up for #RareDiseaseDay. This is 3 times more than reported yesterday! Thank you for your support and participation in this global chain of lights! Together we prove, once again, that... Rare is many. Rare is strong. Rare is proud.

#NewProfilePic

This online survey from the psychology faculty at Sigmund Freud PrivatUniversität Wien is available in English 🇬🇧 & German 🇩🇪, takes 30-40 mins to complete, & is open to anyone living with EB/who is a close relative to someone who has/had EB. Find out more👇🦋bit.ly/2RvLTai

”Vi sprider inte smitta i skogen, på havet eller vägen.” Det skriver ordförandena i sex specialidrottsförbund tillsammans med RF:s ordförande Björn Eriksson i ett öppet brev till Amanda Lind, Mikael Damberg och Lena Hallengren. friidrott.se/Nyheter/allman…

Wow what’s going on?

Snart dax för EB-loppet, välgörenhetslopp för forskningen kring Epidermolysis bullosa. Hoppas du är med och stöttar! ebloppet.se

Join us at 5:45pm (UK time) this Thursday for a special livestream announcement on YouTube. The journey is about to begin. linktr.ee/abbavoyage #ABBAVoyage #ABBA

We kicked off #EBAwarenessWeek with our partners EG Token on The The Balancing Act airing on @LifetimeTV. Check out the segment to learn about EB with #EBSuperhero Brady and EBRP's #CryptoForCures fund founded by #ELONGATE, which supports innovative research to power cures.

Yes Sam Neill it’s once again time for the yearly tradition! 👌🏼

Today I welcomed President Niinistö of Finland to the White House to talk about European security. During our meeting, we called PM Magdalena Andersson of Sweden to discuss enhancing our cooperation. Both countries are valued defense partners to the United States and NATO.

Just wow! 🤩

📺 EB on the news! 📺 This weekend, DEBRA Ambassador Lucy Beall Lott and CEO Tony Byrne were invited onto GB News to talk about #EpidermolysisBullosa and DEBRA. Watch the full interview: bit.ly/40m4gMK #LifeWithEB #EBResearch #RareDisease #RareDiseases #SkinCondition

📣 The FDA has approved Krystal Biotech's gene therapy, VYJUVEK™, for the treatment of dystrophic EB. At DEBRA International, we will work with stakeholders to help promote access to new therapies to all EB patients globally. #EB #EpidermolysisBullosa debra-international.org/post/us-fda-gi…