Cure SMA: Summit of Strength Webinars
30 June 2020 / Posted in: Information, Support
The American organisation have released some of the webinars from their Summit of Strength Virtual Program Series (a series of single-day educational events), with more being released in the coming weeks.
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.
Changes to Shielding Advice
25 June 2020 / Posted in: Information, Support
Following the Government's recent and prospective changes around shielding, we have been liaising with other neuromuscular charities and clinicians. Read more about the latest advice they've provided.
SMA UK Virtual Quiz Night!
19 June 2020 / Posted in: Information, Support
As part of our Community Connections virtual meet-ups, we will be running our first ever SMA UK Quiz Night! It'll be taking place on Thursday 25th June at 8pm, so do join us and invite family and friends (18+years) to sign up too.
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.
Impact of COVID-19 on SMA UK: June Update
10 June 2020 / Posted in: Information
Read the latest about staff furloughing and what else is going on at SMA UK at the moment.
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.
