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New Phase 2 Study of Repurposed Drug for SMA

06 December 2017 / Posted in: Research

Catalyst Pharmaceuticals have announced that they are to investigate the potential of a drug called Firdapse as a treatment for people with SMA Type 3.

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Research survey seeking views on sport participation for non-active disabled people following the London 2012 Paralympics

06 December 2017 / Posted in: Information & Support

If you would like to voice your opinion and assist a third year PhD student, please read more.

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Update on the Scottish Medicines Consortium's Assessment of Nusinersen

30 November 2017 / Posted in: Research

We have now received a further update and clarification that the Scottish Medicines Consortium will be assessing nusinersen for "pre-symptomatic infantile-onset and later-onset 5q SMA, but not for before birth or Adult Onset SMA".

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Petition: Supermarkets To Commit To Providing Changing Places Toilets In Stores Within 18 Months

29 November 2017 / Posted in: Information & Support

A petition has been set up calling for the 6 main supermarket chains to commit to providing Changing Places toilets in their stores within the next 18 months. Please consider signing this petition.

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Do You Know Someone Who Deserves or Needs a Brand New Garden/Home Makeover? Do You Know Someone Who Deserves or Needs a Brand New Garden/Home Makeover?

22 November 2017 / Posted in: Our Community

ITV1's garden makeover show 'Love Your Garden with Alan Titchmarsh' is back (along with sister show, 'Love Your Home and Garden'). Apply or nominate someone who could benefit.

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The NICE Technology Appraisal Programme: Genetic Alliance UK's Respsonse

22 November 2017 / Posted in: Research

Genetic Alliance voices the Rare Disease Community's concerns about the proposed changes to the NICE Technology Appraisal Programme.

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Disability Living Allowance Eligibility

22 November 2017 / Posted in: Information & Support

Contact's research has shown that there is still a lot of confusion about who is entitled to what. Here, they bust some of the myths surrounding the Disability Living Allowance (DLA).

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Biogen SMA Community Update to SMA Europe

17 November 2017 / Posted in: Research

Biogen’s SMA Community Update to SMA Europe covers recent trial results as well as what’s happening in terms of access in Europe and worldwide.

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The Emotional Impact of Living with a Rare or Undiagnosed Condition

16 November 2017 / Posted in: Information & Support

Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition? Complete Rare Disease UK's survey to share your thoughts and experiences.

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Updates on nusinersen/Spinraza Trials at the World Muscle Society Meeting

15 November 2017 / Posted in: Research

The 22nd International Annual Congress of the World Muscle Society (WMS) was held October 3rd-7th 2017 in Saint Malo, France. While SMA Support UK did not attend, Biogen have uploaded three posters to their repository that were presented at the meeting.

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