Author: Marni Smyth
Government Launch the new UK Rare Diseases Framework
A new UK Rare Diseases Framework has been published demonstrating the commitment of the UK Government to improving the lives of people who have rare conditions.
Pathfinders Neuromuscular Alliance are hosting a Natural Nutrition Event
Pathfinders Neuromuscular Alliance are hosting a Natural Nutrition event on Monday 15th March at 1pm.
Shielding Guidance extended until 31st March 2021.
Shielding guidance for those who are clinically extremely vulnerable has been extended now until the 31st March 2021, instead of the previous date given 21st February 2021.
TreatSMA are representing the community at the NICE appraisal of Zolgensma (onasemnogene abeparvovec-xioi).
TreatSMA are today representing the community at the NICE appraisal of the first Gene Therapy for SMA, Zolgensma (onasemnogene abeparvovec-xioi).
New Facebook Group – ‘TreatSMA‘s Professional Therapy Group’
TreatSMA have launched a new Facebook group called TreatSMA‘s Professional Therapy Group.
New Journal Article – A Decision for Life – Treatment decisions in newly diagnosed families with spinal muscular atrophy (SMA)
A new journal article by Gusset et al., 2020 called A Decision for Life – Treatment decisions in newly diagnosed families with spinal muscular atrophy (SMA) has been published.
Clinician statement on the Covid vaccines and Neuromuscular conditions
We have received some advice from Professor Francesco Muntoni, Professor Ros Quinlivan, Dr Adnan Manzur and Dr Chiara Marini-Bettolo who are four neuromuscular experts leading the paediatric and adult North Star and SMA Reach networks of neuromuscular health professionals in regards to COVID-19 vaccinations.
Link to the registered Changing Places toilet map
TreatSMA is sharing the wonderful registered Changing Places toilet map link.