The NHS proposals for rare disease care - what's next?
With a promise of an alert card, a care coordinator and better research, will the UK Strategy for Rare Diseases provide better outcomes for
Beyond politics: the reality of living with a rare disease
It was Rare Disease Day last week. Exciting developments for Superficial Siderosis included Living with Superficial Siderosis' deputation...
Fighting the numbers game
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...
Superficial Siderosis survival: or how to forget the elephant in the room
Dealing with your new life with Superficial Siderosis is challenging, whether you're on Ferriprox or not but the small, beautiful, meani
The Power of Community
We're proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Fear is a powerful...
Forging ahead with the fight against Superficial Siderosis
With the charity application lodged, a cheque delivered to Dr Levy in Baltimore and a meeting with Dr Levy and Dr Werring in London...
Running to get ahead of Superficial Siderosis
It's surprising where buying a pair of trainers can get you. January 2015 and computer programmer Paul Banfield walks into a sports shop...
Built on coffee and Jaffa cakes
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...
