Cure EB

Accelerating research to end painful skin

Latest Events, News & Info

Book Release – Support Cure EB

Get your hands on a beautiful, exclusive hard back edition of Binky’s Time To Fly!

All proceeds go to CURE EB

Butterfly Brunch

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

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!

A bit about us…

Sohana telling us about life with EB

Hi, I’m Sohana, and I have a horrible skin condition called Recessive Dystrophic Epidermolysis Bullosa. I try not to let it get in the way of the things I love doing, like drawing, writing and singing, but there are many things that I can’t do because of EB. There are things that you probably take for granted. Life with EB is painful, difficult, and can sometimes consume the good things, making life a daily battle…

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)

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