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Rori Gary and Michael Levy_edited

Superficial siderosis activists Gary and Rori Daniel deliver a cheque to Dr Michael Levy February 2019, following their trip to Capitol Hill on their research funding trail.

Raising awareness at a country fair in S

Jason Roberts and Amanda Fearn raising awareness in the UK

Jason answering questions

Jason answering questions and talking to revellers at a fundraising event September 2018

Paul Toovey

Silent Bleed team member Paul Toovey Presenting to Professor David Werring at UCHL Queen Square, September, 2016, following a meeting with Michael Levy - an exciting opportunity to discuss next steps.

Cynthia and KJ Vile

Our superficial siderosis friends Cynthia and JK Vile present to Dr Levy

Presentation with Dr Levy

Tom Potts hands another cheque to Michael Levy, March 2018, with Susanne Wilson behind the camera.

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.