SMA Europe Launches Survey: "Help Us Advocate For Our Common Needs"
05 January 2022 / Posted in: Information, Support
This pan-European survey aims to gain an in-depth understanding of the experiences people living with SMA have, with regards to nutrition, physiotherapy and treatment.
Free Mindful Mondays Group Course
05 January 2022 / Posted in: Information, Support
Starting on 10th Jan, this 12-week group course will be delivered by Josephine Dolan-Dufourd. Josephine is an OT based and registered in France with over 21 years experience, she specialises in mental wellbeing and mindfulness training forms the foundation for her work. This course is for anyone who has SMA, as well as family members, partners, carers and friends.
Updates on Covid Vaccinations for Children Aged 5 Years and Over
23 December 2021 / Posted in: Information, Support
The JCVI has recommended that children aged 5 to 11, who are in a clinical risk group or who are a household contact of someone (of any age) who is immunosuppressed, should be offered a primary course of Covid vaccination. Separately, in response to the Omicron variant, the JCVI has also advised that booster vaccinations should be offered to certain groups aged 12-17 years.
UN Resolution Announced to Increase Visibility for the 300 Million People Living with a Rare Disease
21 December 2021 / Posted in: Information, Support
The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and work, reducing poverty, tackling gender inequality, and supporting participation in society.
Our New Advocacy Lead - Say Hello to Portia!
17 December 2021 / Posted in: Information
We're delighted to let you know that Portia Thorman will be joining our team as Advocacy Lead from 4th January 2022. Find out more about her background and why she applied for the job.
Consultations, Campaigns, Surveys & Petitions
16 December 2021 / Posted in: Information, Support
There are a number of different ones on our website which you may wish to complete or get involved with. They cover a wide variety of topics, from research into transition to adult healthcare, to campaigning on the social care crisis.
NICE’s Final Guidance for Risdiplam confirms the Managed Access Agreement will go ahead
16 December 2021 / Posted in: Treatments & Research
We are pleased to see this Guidance and all related papers published today on NICE’s website. Last week’s SMA UK webinar about the treatments and planned roll-out of the programme in England is now also available to watch here and answers many questions the community has been asking.
Information and Support over the Christmas Break
15 December 2021 / Posted in: Information, Support
Our office will be closed from 4.30pm on Thursday 23rd December 2021. We re-open on Tuesday 4th January 2022 at 8.30am. Here are links to where you can access support and information about SMA during this time.
Risdiplam to be Discussed by the Scottish Medicines Consortium on 11th January 2022
14 December 2021 / Posted in: Treatments & Research
SMA UK and MDUK will be taking part. If you would like to attend virtually as a Public Observer, please find the link to register online here. You won’t be permitted to take part in the discussions but you will hear what is said. We understand risdiplam will be discussed sometime after 12.00.
Risdiplam Webinar
07 December 2021 / Posted in: Information, Treatments & Research, Support
On Fri 10th Dec April at 5.30pm, this webinar with Prof. Francesco Muntoni (Consultant Paediatric Neurologist, GOSH), Dr. Chiara Marini Bettolo (Consultant Paediatric and Adult Neurologist, Newcastle) and Fiona Marley (Head of Highly Specialised Commissioning, NHS England), will be hosted by Michaela Hollywood on the SMA UK Facebook and Twitter channels.
