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.
This morning we have received an update from NHS England making it easier to understand who is and isn’t eligible for treatment under the EAMS programme.
TreatSMA have launched a new Facebook group called TreatSMA‘s Professional Therapy Group.
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.
This week we had another amazing webinar with Marion, this week focusing waking up some of the weakest muscles either with or without treatment. It's easy to think that because you are so weak you now can't do anything with…