sohanaresearchfund.org

SRF Danielle de Niese Concert

Fight for a Life Free of Pain.

To End EB. Research the Cure.

Welcome to the Sohana Research Fund (“SRF”). Our aim is to expedite the hugely promising research which is expected to lead to effective treatments and eventually a cure for Recessive Dystrophic Epidermolysis Bullosa (“RDEB”). RDEB is an incurable genetic skin blistering condition. It is progressive and incredibly painful.

RDEB is like having burns, but burns that take a long time to heal – if they heal at all. Imagine having burns every day of your life? This is the reality of RDEB. Children with this condition live a life of constant pain.

In the words of our 10 year old daughter, Sohana,

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

Most of us take our skin for granted. We walk, we run, we eat and sleep without pain. Our skin protects us. Read on to find out what happens when skin does not work.

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Fight for a Life Free of Pain.

To End EB. Research the Cure.

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