Text POP to 70300 to give £3
to Cure EB (Registered charity 1158672)

100% of your donation goes to the charity. You may also be charged for one standard rate message. Always get the bill payers permission. Service provider Vir2 text helpline: 033 0660 0425 Cure EB will not sell your mobile number to anyone. We would like to send you the occasional text message about our progress in finding a cure. Add the words NO INFO at the end of your message (e.g. POP NO INFO) if you don’t want to be contacted again.

Epidermolysis Bullosa


Cure EB – formerly The Sohana Research Fund

Sohana has lived with Recessive Dystrophic Epidermolysis Bullosa (“RDEB”) since she was born in 2002. That means she has never known even one day without pain. I cannot imagine what that is like, even though I dress her wounds daily – can you?

She amazes us all with her sunny, positive, humorous outlook on life. Her resilience and fighting spirit are obvious to everyone who has contact with her – but what she dreams of most – is a cure.

There are up to 5000 children and adults living with EB in the UK, 500,000 worldwide. RDEB causes blisters and wounds and is like having very severe burns, outside and inside, eventually leading to skin cancer. Currently there is no cure but enormous strides have led us to the brink of gene therapy treatments and cures.

Our name is our mission- to cure EB. We would be grateful for anything you could do to help.

Sharmila Collins
Sohana’s mum
(Founder and Trustee Cure EB)

Why not join our network of friends across the country by hosting your own Cure EB Butterfly Brunch?

Click on the poster to learn about the Butterfly Brunch Club!

22nd September 2019 – Cure EB Butterfly Run


Following the success of our inaugural Butterfly Run in 2018, we’re planning another fun-filled day in the Olympic Park!
What we want most is for children and adults to fly free from the pain of EB and make the blisters and wounds stop.
We would love you to join us at the Olympic Park in Stratford, within the shadow of the Olympic stadium to run/walk or wheel to help #CureEB
There are events to suit everyone such as an egg and spoon race, 1K, 5k and 10K races so bring your family and friends and have fun!
CLICK HERE to register
Are you entering a group or team? Download our group entry form here: CLICK HERE
Take a look at our previous events


There is only one thing in my life that I hate and that is EB. I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t ” 

Fight for a Life Free of Pain.

To End EB. Research the Cure.