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Thank you for supporting Marathon in May for SMA Thank you for supporting Marathon in May for SMA

21 June 2018 / Posted in: Help Us

We would like to say a huge Thank You to everyone who has supported the very first Marathon in May for SMA.

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PTC Therapeutics Present Interim Data from FIREFISH Clinical Trial

21 June 2018 / Posted in: Research

PTC Therapeutics recently presented preliminary data from the FIREFISH Phase II clinical trial of their splice-modifying drug, RG7916, at the 2018 Cure SMA conference in Dallas, USA.

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Cytokinetics Release CK-2127107 Phase II Clinical Trial Data

20 June 2018 / Posted in: Research

Cytokinetics presented data at the 2018 Cure SMA conference from the Phase II clinical trial with SMA patients of its drug CK-2127107, which has been renamed reldesemtiv.

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Cabinet Secretary for Health and Sport in Scotland Outlines New Pathway For Medicines

19 June 2018 / Posted in: Research

A statement came out yesterday that explains how patients with rare diseases in Scotland could get faster access to new treatments following a revised decision-making process. The Scottish Government is introducing a new definition of 'ultra-orphan medicines' that can treat rare conditions.

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Summer Fundraising Events in Scotland Summer Fundraising Events in Scotland

19 June 2018 / Posted in: Help Us

Find out more about exciting events that are happening in Scotland over the summer which you could take part in to help raise money for SMA Support UK.

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Latest Updates on Global Access to Nusinersen

18 June 2018 / Posted in: Research

We have asked Biogen to keep us updated with this latest information as we all continue to advocate for broad access in the UK.

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Carers: Your Right To Request Flexible Working Hours

14 June 2018 / Posted in: Information & Support

Carers UK have information on their website and a free, downloadable guide on your right to request flexible working.

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Roche Update: SUNFISH Trial Not Going Ahead In The UK

14 June 2018 / Posted in: Research

We have received the following update from Roche about the SUNFISH study, investigating RG7916 in people with SMA Types 2 or 3, which will now not be recruiting in the UK.

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Petition to End the Care Crisis

12 June 2018 / Posted in: Information & Support

After surveying nearly 4,000 adults of all ages who need care or who look after someone with care needs, the Care and Support Alliance (CSA) discovered that people are unable to get the basic care and support they need. Add your voice to their campaign and sign the petition.

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First Cohort Dosing Completed in SRK-015 Phase 1 Clinical Trial

08 June 2018 / Posted in: Research

Pharmaceutical company Scholar Rock has announced that dosing of the first cohort has been completed in a Phase I trial of the experimental drug, SRK-015.

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