Latest News: Treatments & Research
Effect of risdiplam on Female Fertility and Menstruation
10 July 2020 / Posted in: Treatments & Research
Roche has responded to the question we asked on behalf of the Community about this.
Further Small Studies Support the Use of Nusinersen for SMA Treatment in Adults
03 July 2020 / Posted in: Treatments & Research
Three scientific reports have been published that present observations from adults who have SMA treated with repeated injections of nusinersen into the fluid bathing the spinal cord and brain.
Progress with Access to Nusinersen in European Countries for Adults who have SMA
25 June 2020 / Posted in: Treatments & Research
Thank you to the SMA Europe member countries who responded to our request for information about the reality of access to treatment by adults in their country. Some provided other information about access in general, and testimonials.
Roche Presents New Data on SUNFISH & JEWELFISH Trials at the Cure SMA Annual 2020 virtual Conference
16 June 2020 / Posted in: Treatments & Research
Roche presented this new data at the virtual Cure SMA Annual Conference, which took place between 8th and 12th June.
Further Positive Results in NURTURE Study with Pre-Symptomatic SMA Patients Treated with Nusinersen
12 June 2020 / Posted in: Treatments & Research
New results from the NURTURE study show that pre-symptomatic SMA patients treated with nusinersen continue to demonstrate sustained benefit from treatment.
NICE / NHS England Answer the Patient Groups FAQS about Adults’ Access to Nusinersen Treatment in England
11 June 2020 / Posted in: Treatments & Research
NHS England and NICE have provided further responses to these FAQs, around adults' access to nusinersen, raised in August 2019 by the patient groups.
Information Statement from the NHS England Clinical Panel for Nusinersen
11 June 2020 / Posted in: Treatments & Research
This is about access to the risdiplam Compassionate Use Programme for anyone who has SMA Type 1 or 2 who is already receiving nusinersen but who has had their treatment interrupted because of COVID-19.
NICE & NHS England Answer Further FAQS about the Nusinersen MAA; Biogen Gives Update on Global Access
09 June 2020 / Posted in: Treatments & Research
You can read these communications in this update. Answers to our FAQs about adult services will also be coming soon.
Three Further Centres will be Offering Nusinersen Treatment to Adults
02 June 2020 / Posted in: Treatments & Research
NHS England has advised us that three more NHS Trusts will offer this service: King's College Hospital, North Bristol and Southampton University Hospital. They will join the other eight centres. Read more here about what is happening with adult services.
AveXis UK Updates the Community on Progress Towards Access to Zolgensma
28 May 2020 / Posted in: Treatments & Research
We received this update today in response to our questions around progress towards access in the UK.
