07 March 2017 / Posted in: Research
In response to our request for an update, Biogen has released this statement today.
02 March 2017 / Posted in: Help Us
A Pancake Day recently held by Amy Cameron raised a whopping £245! We would like to say a big thank you to Amy and all her family and friends who got involved.
02 March 2017 / Posted in: Research
The charities shared a stall at Royal Holloway’s annual Rare Disease Day event on February 24th.
01 March 2017 / Posted in: Information & Support
The Nuffield Council on Bioethics today has launched its new report 'Non-invasive prenatal testing: ethical issues' which explores the ethical issues raised by non-invasive prenatal testing (NIPT).
13 February 2017 / Posted in: Information & Support
Having SMA, or having a child with SMA, can have financial implications so it is important to ensure you are receiving all the benefits and services you are entitled to. There are several organisations that may be able to help with this.
10 February 2017 / Posted in: Information & Support
Contact a Family have launched their biggest inquiry into school transport for disabled children, and they want to hear from you. Take part in their survey to share your experiences, both positive and negative.
10 February 2017 / Posted in: Our Community
Charlie contacted us wanting to become more involved with SMA Support UK and offering to volunteer his services. We suggested he might like to start by sharing some of his many and varied experiences.
09 February 2017 / Posted in: Research
AveXis has announced details of a European pivotal trial of their gene therapy drug for SMA, AVXS-101.
09 February 2017 / Posted in: Information & Support
Be in control and buy a Radar Key from Disability Rights UK for priority access to over 9000 accessible toilets in the UK.
07 February 2017 / Posted in: Information & Support
Do you employ a personal care assistant, or know someone who does? These short seminars will explain the law surrounding employing a personal care assistant.