cure-eb.org

 


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to Cure EB (Registered charity 1158672)

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Water balloons or any balloons will do! #EBpop!

EBpop poster - click to learn more about EBpop
#EBpop txtboard – PDF download
Click on the poster to learn about EBpop!*For schools/organisations who don’t want to use social media, please see this flyer

Epidermolysis Bullosa

HARD TO SAY. HELL TO LIVE WITH.

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)

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 ” 

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

Come on, get your wings on and register here, and help us spread ours!

Fight for a Life Free of Pain.

To End EB. Research the Cure.