27 June 2018 / Posted in: Treatments & Research
Today, we are at the NICE Committee Meeting in Manchester which is considering whether to recommend access to nusinersen; we will know the outcome in 3 – 4 weeks’ time. Thanks to the other two Patient Representatives who are also attending.
26 June 2018 / Posted in: Support
A group of three West Midlands CCGs are reviewing their policy on cough assists, which could result in patients being denied this vital piece of equipment. We have added our voice to protest against this.
25 June 2018 / Posted in: Information
Disability Rights UK is looking for disabled young people aged 12-18 years to become members of the project advisory board for a research project looking at attitudes towards disability and disabled people amongst their peers.
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.
21 June 2018 / Posted in: Treatments & 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.
20 June 2018 / Posted in: Treatments & 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.
19 June 2018 / Posted in: Treatments & 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.
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.
18 June 2018 / Posted in: Treatments & 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.
14 June 2018 / Posted in: Support
Carers UK have information on their website and a free, downloadable guide on your right to request flexible working.