Jenny 🦋

EB mum, former chairman debra Sweden, work with Logistics. Run for EB Sweden: #ebloppet #run4ebsweden

[DEBRA International @InterDEBRA]

📣 The FDA has approved @KrystalBiotech's gene therapy, VYJUVEK™, for the treatment of dystrophic EB. At @InterDEBRA, we will work with stakeholders to help promote access to new therapies to all EB patients globally. #EB #EpidermolysisBullosa https://t.co/fsmZB0lVSe

[DEBRA UK @CharityDEBRA]

📺 EB on the news! 📺

This weekend, DEBRA Ambassador @AuthorLucyBeall and CEO Tony Byrne were invited onto @GBNEWS to talk about #EpidermolysisBullosa and DEBRA.

Watch the full interview: https://t.co/hGiC47CjW4

#LifeWithEB #EBResearch #RareDisease #RareDiseases #SkinCondition

[Jenny 🦋 @EBifamiljen]

Just wow! 🤩

[European Athletics @EuroAthletics]

Just @mondohoss600 making yet more history. 🤯

This is how he cleared 6.22m at the @AllStarPerche! 🚀

(Video from @FFAthletisme)

[President Biden Archived @POTUS46Archive]

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.

[Jenny 🦋 @EBifamiljen]

Yes @TwoPaddocks it’s once again time for the yearly tradition! 👌🏼

[Sam Neill @TwoPaddocks]

SWEDEN ! I have strapped on my body armor, renewed my courage, got my evils back, and am braced once again to Sweden's MOST HATED. And this year I WILL WIN . #HappyNewYear2019 #Ivanhoe

[EB Research Partnership @EBResearch]

We kicked off #EBAwarenessWeek with our partners @elongateog on The @BalancingActTV 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.

[ABBA Voyage @ABBAVoyage]

Join us at 5:45pm (UK time) this Thursday for a special livestream announcement on YouTube. The journey is about to begin.
https://t.co/BxY6Fk8HpN

#ABBAVoyage #ABBA

[Jenny 🦋 @EBifamiljen]

Snart dax för EB-loppet, välgörenhetslopp för forskningen kring Epidermolysis bullosa. Hoppas du är med och stöttar! https://t.co/Wh8cEKkHcw

[Jenny 🦋 @EBifamiljen]

Wow what’s going on?

[ABBA Voyage @ABBAVoyage]

Join us at https://t.co/AAFQLIrqJu #ABBAVoyage

[DEBRA International @InterDEBRA]

This online survey from the psychology faculty at @FreudSfu 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👇🦋https://t.co/XGsVAwxWIC

[Svensk Friidrott @SvenskFriidrott]

”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.
https://t.co/9CDXkurkAV

[Jenny 🦋 @EBifamiljen]

#NewProfilePic

[EURORDIS-Rare Diseases Europe @eurordis]

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.

[Rare Disease Day @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?

[Rare Disease Day @rarediseaseday]

📢 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

[Cure EB @CureEBorg]

Brush up on your Epidermolysis Bullosa knowledge with this handy infographic introducing you to EB.

For more information, visit our website.🦋

https://t.co/GxoBIT0c27
#MondayMotivation #charity #cureEB

[EB Research Partnership @EBResearch]

FOUR Phase 3 #clinicaltrials in EB are ongoing today! #Phase3 is the last phase of trial before @US_FDA considers approval of a therapy; we're closer to an available EB treatment than ever before. Learn more about EB clinical trials at https://t.co/6UNmLQw8TU 🧪🧬🔬

[EB Research Partnership @EBResearch]

#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 https://t.co/7cOXo1nCXZ

[Jenny 🦋 @EBifamiljen]

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

[Sam Neill @TwoPaddocks]

#SWEDEN! Go Brian ! This MUST be your year ! Meantime we must apologise - Two Paddocks Wines WILL be available in Sweden soon, but alas not quite in time for #Ivanhoe today. Stuck at sea I'm afraid. But another reason to be optimistic for #2021. Shame - a perfect match ...

[Cure EB @CureEBorg]

“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

https://t.co/LR9ikbG9WW