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 to Capitol Hill for research funding and another one thousand pounds presented to Dr Michael Levy for his important research (with thanks to the generosity of those who support The Silent Bleed). More to follow on both of these happy events.

On the same day, Twitter was alive with an announcement from UK Health Minister, Nicola Blackwood, which has potentially huge implications for those with Superficial Siderosis in England.

She promised that NHS England would provide each person with a rare disease: