SMA Awareness Month – GBL Wheelchairs
For today’s webinar we were joined by Ian Laker from GBL wheelchairs to talk about light weight self propelled wheelchairs, seating and to answer some of your questions.
Category: Updates
SMA Awareness Month – SMA and nutrition
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 UCL.
SMA Awareness Month – Our very own Trustee Andi gets robotic
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…
Trustee Joseph Irwin looks back at 30 years of changes in EU legislation in drug development for rare diseases in his latest paper
TreatSMA trustee Joseph Irwin looks back at 30 years of changes in EU legislation in drug development for rare diseases in his latest paper.
Trustee Joseph Irwin looks back at 30 years of changes in EU legislation in drug development for rare diseases in his latest paper
TreatSMA trustee Joseph Irwin looks back at 30 years of changes in EU legislation in drug development for rare diseases in his latest paper.
Summary of Roche Q&A and information on risdiplam
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…
Summary of Roche Q&A and information on risdiplam
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…
SMA Awareness Month – Interview with Dr John Bach on respiratory management in SMA
Dr John Bach is a world renowned expert in non-invasive respiratory care. A legend in his field he has well over 600 papers published as well as books that I used across the world to help manage all types of SMA conditions. We are really privileged as this is the 3rd time John has joined…