Cure EB

Recessive Dystrophic Epidermolysis Bullosa(RDEB) Research. http://www.youtube.com/watch?v=nmwdsCoGQkw
https://www.justgiving.com/cure-eb It is “Hard to say.

UK registered Charity no 1158672
Cure EB exists to treat and cure epidermolysis bullosa, a genetic skin condition that leads to blistering and skin loss with the mildest friction. Hell to live with” and children and adults with the condition live in constant pain associated with the severe burn like wounds that occur. The intense pain and repeated damage leads to progressive disability and severe forms are life shortening due to a particularly aggressive skin cancer that develops in early adulthood.

30/09/2026

We can't wait for our Butterfly Run on Sunday! 🦋💙

Advanced registration for the run is now closed. If you've booked your place already - see you there!
If you want to support Cure EB, visit www.cure-eb.org/butterflyrun and scroll down to the Donate or Set up a Fundraiser options.

If you haven't booked your place and would like to join the fun, there will be a limited number of places available on the day on a first come, first served basis.
Registration opens at 9.30am.
See www.cure-eb.org/butterflyrun for more details.
🏃🚶👩‍🦽
Flen Health 🦋

27/09/2026

Our Butterfly Run is just one week away! So what are you waiting for? Book your place now and join us on the starting line! www.cure-eb.org/butterflyrun

📅 Sunday 4th October
📍 Queen Elizabeth Olympic Park
👟 10k, 5k or 1k
🏃🚶👩‍🦽 run, walk or wheel

Advanced booking closes on 29th September so don't delay, book your tickets today!

25/09/2026

We are counting the days until our EB Family Day on Sunday 4th October!
What makes it so special? It's a chance for our EB community to come together to have fun & hear about the latest research. We have some fantastic speakers joining us this year.

If you or a family member have EB, we'd love you to join us - register now: www.cure-eb.org/familyday

23/09/2026

Ollie & Natasha at Bull at the Gate won an afternoon with the brilliant at our Silver Butterfly Dinner earlier this year so they decided to put him through his paces at their gym in Holborn💪

All the money raised at the event funds research into effective treatments and a cure for Epidermolysis Bullosa.

22/09/2026

🦋 EB Family Day - Speaker Spotlight 🦋 What can you expect from hand surgery? Mr Ricardo Tejero Trujeque & Andrea Cudazzo will speak about when to choose hand surgery and what to expect pre- and post-op.

If you or a family member have EB, join us to hear from the experts, while the children are entertained with games and crafts. Plus lunch and plenty of tea and cake with time to meet other EB families.

🦋 www.cure-eb.org/familyday to book your free place.

21/09/2026

Last chance to register for our Research The Cure webinar with Dr Robert Ryan: https://cure-eb.org/event/researchthecure-sep26/

Join us for this free webinar to hear about an upcoming phase III clinical trial for a topical whole body treatment for EB patients with Simplex, Recessive Dystrophic and Junctional EB.

📅Wednesday 23rd September 2026
🕓1.30pm BST
💻Online - free to join, but you must register

20/09/2026

It's just two weeks until our Butterfly Run on Sunday 4th October at Queen Elizabeth Olympic Park
Not booked your tickets yet? Worry not, you can do that by visiting www.cure-eb.org/butterflyrun

🏃🚶👩‍🦽With 10k, 5k and 1k race options to choose from, and the option to run, walk or wheel, there's something for everyone!

We'd love to see you there. So book your tickets now before online bookings close on 29th September.

18/09/2026

🦋 EB Family Day - Speaker Spotlight 🦋

Why are we collecting blister fluid? How will it help and what’s it got to do with gene editing? Dr Joanna Jacków-Malinowska and Aidin Kazemizadeh are joining us to fill us in.

If you or a loved one have EB, then book your free place at our Family Day on Sunday 4th October at Queen Elizabeth Olympic Park
Visit www.cure-eb.org/familyday to book!

16/09/2026

Join us next week as Sharmila talks to Dr Robert Ryan about an upcoming Paradigm Therapeutics phase III clinical trial at our webinar

📅Wednesday 23rd September, 1.30pm
🌐Online
💻Free to join but you must register at www.cure-eb.org/event/researchthecure-sep26

15/09/2026

🦋 EB Family Day - Speaker Spotlight 🦋

Prof Jemima Mellerio will join us to talk about an upcoming decorin clinical trial for adults with dystrophic EB at St Thomas’ hospital in London.

If you or a loved one have EB, join us at our EB Family Day on Sunday 4th October at Queen Elizabeth Olympic Park in London. Book your free place now: www.cure-eb.org/familyday

Address

175-185 Grays Inn Road
London
WC1X8UE

Telephone

+442034058433

Website

http://www.cure-eb.org/

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