21 August 2017 / Posted in: Information & Support
Genetic Alliance UK is now running a survey to understand patients' experiences including any challenges they face, or concerns they have, when applying for insurance. This information will help them to update the resources available on their website.
16 August 2017 / Posted in: Research
Roche has begun to enrol SMA patients in the FIREFISH Phase II trial of their splice-modifying drug, RG7916 (also known as RO7034067).
16 August 2017 / Posted in: Information & Support
The Disabled Children's Partnership recognise what holidays are like for disabled children and young people, and their families. Here, they list some of their top tips.
07 August 2017 / Posted in: Research
We have clarified that, from now on going forwards (until we hear from NICE), children will have to be diagnosed by 7 months of age to be eligible. If you have a child who has already been diagnosed with SMA Type 1 who is older than this and not already on the EAP, please read more.
04 August 2017 / Posted in: Research
All hospital costs for administering nusinersen to patients with SMA Type 1 will be provided by NHS England.
02 August 2017 / Posted in: Information & Support
Contact a Family are concerned that around 100,000 parents with disabled children are at risk of being worse off on Universal Credit. Sign their petition to the prime minister to reverse cuts to child disability payments under Universal Credit.
01 August 2017 / Posted in: Our Community
We are currently looking for new trustees to join our trustee board to provide governance and strategic direction to the charity, and to support the small office team who are based in Stratford-upon-Avon.
01 August 2017 / Posted in: Help Us
Each pack includes prize-winning recipes, inspirational stories, posters, balloons and bunting to help make your event a success. Order yours for free now!
21 July 2017 / Posted in: Research
Held on 18th July, this covered the current provision of nusinersen for infants with SMA Type 1 through the Expanded Access Programme (EAP) and what progress there has been towards the possibility of wider access.
19 July 2017 / Posted in: Information & Support
They are looking for people to record short videos on their phones/cameras when they genuinely encounter a problem when using public transport.