Author: Andi Thornton
TreatSMA Vigil 6th March 2019
On 6th March, TreatSMA along with many families and adults from the SMA community will once again travel to Manchester for the 3rd appraisal meeting of nusinersen.
Replies from the NHS and the Department of Health
Replies from the Department of Health and the NHS to the Community’s open letter
FAQ asked about type 1 SMA patients
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.
TreatSMA frustration at lack of NHS, NICE rare disease policy changes
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 was signed by those who previously agreed for their name to be added. Community letter
Nasogastric intubation
At some point in your child’s life / your life, there may come a time when swallowing may become difficult or weight gain may become slower.
Are you sitting comfortably…
Before finding this product, the only seating my daughter had was a big clumpy tumble form chair and her Wizzybug.
Final appraisal meeting for Spinraza (nusinersen)
TreatSMA along with other patient advocacy groups, patient experts and clinicians, attended and contributed at the final appraisal meeting for Spinraza (nusinersen) at NICE office on Tuesday 23rd October.
Final appraisal meeting for Spinraza (nusinersen)
TreatSMA along with other patient advocacy groups, patient experts and clinicians, attended and contributed at the final appraisal meeting for Spinraza (nusinersen) at NICE office on Tuesday 23rd October.