The Superficial Siderosis charity

With a promise of an alert card, a care coordinator and better research, will the UK Strategy for Rare Diseases provide better outcomes for people with superficial siderosis?

It was Rare Disease Day last week. Exciting developments for Superficial Siderosis included Living with Superficial Siderosis' deputation to Capitol Hill for research funding and another one thousand pounds presented to Dr Michael Levy for his important research (with...

What rare doesn't mean

The last day of February is usually the 28th but every four years, it's the 29th - this is a rare day.

No wonder then, that it was the date chosen to celebrate Rare Disease Day every year (and yes, when it's not a Leap Year, it falls on the 28th).

B...

Dealing with your new life with Superficial Siderosis is challenging, whether you're on Ferriprox or not but the small, beautiful, meaningful things of the world that add up to more than the sum of their parts are still there. On a good, day you’ll find them. On a...

We're proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel.

Fear is a powerful emotion. Anxiety shows no sympathy. Fear destroys if you give it power. A rare disease diagnosis, especially one as unknown as Superf...

With the charity application lodged, a cheque delivered to Dr Levy in Baltimore and a meeting with Dr Levy and Dr Werring in London planned for next week, it's all go at The Silent Bleed.

We've had a pleasant summer. It all started with a stand at a country fair in June...

It's surprising where buying a pair of trainers can get you.

January 2015 and computer programmer Paul Banfield walks into a sports shop and buys a pair of running shoes. Kitted out with a waterproof and a headband, he plugs into a running schedule and heads out into...

It's taken a while but this is our new website.  The success of our little group and the old website we created has been staggering and well beyond what we hoped for when we dreamt it all up over coffee on a wet, dreary day one February.

And since then, the Jaffa cakes...