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Living with SS research support projects and the Patient Registry

What you need to know and what you can do to help

Data leads the way

Like most people dealing with a rare disease, those with Superficial Siderosis are struggling with a numbers game. Its hard to get noticed.


Lack of awareness leads to a lack of diagnosis and therefore greater rarity.

All too often, rarity equates with irrelevance.

Something irrelevant is less likely to attract funding or attention.

This then feeds back into lack of awareness.


As a charity, we regularly hear from patients who are learning about Superficial Siderosis alongside their neurologist – or their doctor hasn’t even heard of the condition before. Where can they go for advice or how can someone who has to stand by and watch get a diagnosis and treatment for a loved one?


Thankfully, we’ve been able to work with a few of the world’s respected experts on Superficial Siderosis, enabling some patients to get the support they need despite the numbers game but what if there was a way that the cycle could be broken for good, for everyone?

Open to carers and physicians too, we believe it will stimulate research and give specialists a clearer picture of the condition’s prevalence.


Registration is straightforward, the administrators take privacy and security seriously and you’ll also find clear information about the purpose and organisation behind the project.


To join in, head over to Living with SS and sign up* today - and check out founder Rori Daniel's Silent Bleed guest blog post on why community is such a game-changer.


Living with SS are also heading up efforts to secure funding for a double-blind deferiprone trial and a tissue donation programme for a natural history study on the progression of the condition. Click the links above for more information.

Together, we'll find a cure sooner.

* links will open a new window, taking you to an external site.

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