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Royal Wedding-Themed Ball Royal Wedding-Themed Ball

20 February 2018 / Posted in: Help Us

Laura and Jason Turk are holding this event in memory of their daughter, Isabel, on 19th May near Stroud. Why not join our SMA Support UK table or donate a prize for the raffle?

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Are you Willing to Talk to the Media About your Experience of SMA and Access to Nusinersen?

16 February 2018 / Posted in: Research

As part of our ‘working together for access to nusinersen’, MDUK is managing our media contact & would like to hear from you. You'd be fully supported by a member of the MDUK media team through the interview process, & you'd get to choose which media you're happy to speak to.

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Your Views on the Need for Access to Emotional and Psychological Support

16 February 2018 / Posted in: Information & Support

This is a vital element of support for individuals and families to manage and cope with muscle-wasting conditions. The All Party Parliamentary Group (APPG) for MDUK's new inquiry into access to psychological support is now taking evidence. You can give your views.

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Are you Affected by SMA Type 1 and Willing to Share your Experience with TreatSMA?

16 February 2018 / Posted in: Research

As part of our ‘working together for access to nusinersen’, TreatSMA is gathering people’s experiences to present to NICE. If you are willing to take part, please click here to find out more.

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Information, Support & Social Weekend April 2018

15 February 2018 / Posted in: Information & Support

We have been delighted with the response to this event, however, this does now mean that we are completely full to capacity for the whole weekend so any further booking requests we take will go on a waiting list.

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Map the Gap Campaign

14 February 2018 / Posted in: Research

Part of the larger initiative, The GenomeAsia100K project, Map the Gap aims to sequence 100 South Asian Genomes, enabling the development of carrier tests, diagnosis, and treatment for rare diseases, cancers, and diabetes.

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Rare Disease Day – 28th February 2018

14 February 2018 / Posted in: Research

Taking place each year on the last day in February, the main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

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Petition to End Prescription Charges for People with Long-Term Conditions

14 February 2018 / Posted in: Information & Support

England is the only part of the UK that charges for prescriptions. It's time that everyone with a long-term condition has access to free prescriptions. Sign the prescription charges coalition petition.

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Contact: Latest Guides and Information

14 February 2018 / Posted in: Information & Support

Contact have published a number of different guides and information sheets that you might find helpful, including their ‘Money Matters’ guide which outlines all the financial help you may be entitled to.

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Opportunity to let NICE hear your views about the impact of 5q SMA and who should be able to access nusinersen

12 February 2018 / Posted in: Research

SMA Support UK has set up a number of surveys so that we can collect different people’s views and share them with MDUK, SMA Trust, TreatSMA, and NICE. Deadline to complete survey(s) is 18th Feb.

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