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Research is everything

We're playing a numbers game - more awareness brings about better opportunities for diagnosis and the more numerous we are, the louder we can shout. From talking to our members, we're sure that superficial siderosis isn't as rare as first thought, it's just difficult to diagnose and not enough doctors know about it.

We can't do it with goodwill alone

Money helps. If it relied on solely on determination, we'd have found the cure by now but like most people dealing with rare disease, we're working right at the edge of scientific research. The kind that takes leaps of faith, creative thinking and the kind of simple human dedication to a cause that goes above and beyond the call of duty. Clinical studies need funding to operate, doctors need backing to be taken seriously, patients and families need to know that they've got the medical community behind them.

The majority of the grants we make go to research, in particular to Dr Levy's studies at Johns Hopkins. If you're activity engaged in research or you have a proposal underway, please contact us for more information about The Silent Bleed's grant making policy.

Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

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(c) The Silent Bleed 2019

Registered as a Charity in England and Wales since 2016

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The reason we exist is to make our voices heard about superficial siderosis, so please feel free use the text on this site as you need to - all we ask is that you clearly mention us as the source and that you drop us a donation. Please ask permission to use photographs because many of them feature our members and it's only fair to ask them first. Many thanks.