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Celebrating Rare Disease Day 2019

  • 17 February 2019

In less than two weeks we will start celebrating Rare Disease Day – that annual day when all those who are affected by a rare disorder go out and speak about it. The global rare disease community holds celebrations throughout the world. This year TreatSMA will take part with an online campaign and a face-to-face event in the South East.

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NICE will review Spinraza again on 6 March

  • 1 February 2019

For the third time a drug appraisal committee of the National Institute for Health and Care Excellence will meet to review the nusinersen (Spinraza) dossier. The meeting will take place on the 6 March in Manchester.

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