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Page last updated: 29th January 2024

The Risdiplam Managed Access Agreement was agreed on 16th December 2021. The treatment programme started to roll out under the terms of the agreement on 17th January 2022:

SMA UK and the other Patient Groups have all been part of the Managed Access Oversight Group​. If you are concerned about your access, please talk first and foremost to your medical team but do please get in touch if you want to discuss your access.

In 2024, The National Institute of Health and Care Excellence (NICE) is reviewing whether to recommend that the NHS continues to fund risdiplam treatment. Read more >

Our 10th December 2021 webinar with a panel of experts discussed many questions raised by the Community about the treatment. On the panel were:

  • Prof. Muntoni (Consultant Paediatric Neurologist, GOSH);
  • Dr. Chiara Marini Bettolo (Consultant Paediatric and Adult Neurologist, Newcastle);
  • Fiona Marley (Head of Highly Specialised Commissioning, NHS England & Improvement)