Below are some the most frequent questions and problems that we are seeing within the Type 1 community. We have compiled a guide based on the evidence from the newly Published Standards of Care, AA diet website and other documents or protocols that are used within the community.
In the view of recent NHS plan we once again contacted NHS, Government and NICE highlighting that no significant changes in the policy has been made to accommodate rare diseases. The letter shows our frustration with the system and signed…
**I am not medically trained, this post is from a parents point of view and experience** Nasogastric intubation is a medical process involving the insertion of a plastic tube (nasogastric tube or NG tube) through the nose, past the throat,…
Today, the Polish minister for health announced that Spinraza will be available through the national health care in Poland.
Please note all views are my own and are not affiliated with the company fledglings.
Just the ability to sit is a luxury most of us take for granted and something which a lot of people with SMA find difficult or even impossible. Before finding this product, the only seating my daughter had was a big clumpy tumble form chair and her Wizzybug, everything else was on normal seats being propped up by a gazillion cushions whilst still flopping over, floor play was nigh on impossible and bath time out of her own home was a nightmare.
Novartis announces FDA filing acceptance and Priority Review of AVXS-101, a one-time treatment designed to address the genetic root cause of SMA Type 1
Today TreatSMA along with SMA Support UK and Muscular Dystrophy UK sent another letter to NICE, in which we asked that nusinersen be placed on the agenda of the nearest Committee C meeting which will take place on 6 February.