skip to Main Content

Questions and Answers session with Roche about Risdiplam

  • 21 August 2020

We joined a session with Roche earlier this week to ask them questions following their recent announcement about risdiplam. The following FAQs have been checked for accuracy with Roche where they relate specifically to risdiplam.
Questions and answers apply to people living in England, Scotland, Northern Ireland and Wales.

Read More

MHRA approve risdiplam EAMS application

  • 17 September 2020

We currently have limited information but we wanted  to get news out to you as soon as possible. The MHRA have approved the use of risdiplam for type 1 and type 2 patients over the age of two months with no upper age limit.

Read More

SMA Awareness Month – SMA and nutrition

  • 6 September 2020

In this webinar we had the pleasure of being joined by Dr Giovanni Baranello who is a senior Clinical Lecturer in Neurosciences at Great Ormond Street Hospital as well as a Clinical Lecturer in Paediatric Neurology and Neuromuscular Disorders at…

Read More

SMA Awareness Month – Our very own Trustee Andi gets robotic

  • 6 September 2020

In this video we got to see Andi attempting to use the Jaco robotic arm. An amazing piece of technology that has been around for some time now and gives those who are unable to use their arms effectively the freedom to be able to pick up items, open doors, pickup glasses of water (and beer of course) as well as a whole host of other things.

Read More

Summary of Roche Q&A and information on risdiplam

  • 21 August 2020

Earlier today we published a series of questions and answers that we got from Roche relating to the recent news about risdiplam, and in particular, the expansion of the compassionate usage programme (CUP). It was a long document but we wanted to get it out to you as quickly as possible. However, we thought it might be useful to give you a quick summary of the key points.

Read More
Back To Top