Tel: 01789 267520

Roche Initiate Phase II Trial of RG7916

27 September 2016 / Posted in: Research

Roche have announced that they are to begin recruiting SMA patients in two parallel Phase II clinical trials of their second splice-modifying drug, RG7916 (also known as RO7034067).

Read full story

Genetic Alliance UK launch the Hidden Costs Feasibility Study Report

27 September 2016 / Posted in: Information & Support

Genetic Alliance UK’s ‘Hidden Costs’ report reveals that individuals and families affected by rare diseases face substantial financial and psychosocial costs as a result of poorly coordinated care in the UK.

Read full story

Biogen and Ionis update on New Drug Application for Nusinersen

27 September 2016 / Posted in: Research

In response to requests for information, this update from Biogen and Ionis is for all in the SMA community.

Read full story

Inspirations Autumn 2016 Inspirations Autumn 2016

23 September 2016 / Posted in: Our Community

Follow the link to download the latest copy of our Inspirations newsletter for Autumn 2016.

Read full story

Leaflet Receives Commended Certificate

23 September 2016 / Posted in: Information & Support

SMA Support UK has received a commended certificate in the 2016 British Medical Association (BMA) Patient Information Awards for our leaflet Future Options in Pregnancy.

Read full story

Molecular “Homing Devices” Drastically Improve SMA Therapy

22 September 2016 / Posted in: Research

Antisense oligonucleotide technology holds great promise for the treatment of SMA.

Read full story

Supporter of the Month: September 2016 Supporter of the Month: September 2016

21 September 2016 / Posted in: Our Community

This month we would like to celebrate the fundraising achievements of Ernie and Joan Sedgwick.

Read full story

New SMA Voices: Finlay

21 September 2016 / Posted in: Information & Support

In this SMA Voices, Finlay's parents share their thoughts, feelings and experiences about their son who had SMA Type 1 and sadly died last year.

Read full story

The Implications Of Genetic Screening?

20 September 2016 / Posted in: Information & Support

In our latest SMA Voices story, Esther Fox, artist, and Felicity Boardman, researcher, ask all of us to consider the wide ranging implications that pre-natal genetic screening would have if it were more widely available.

Read full story

Cure SMA Conference 2016 Report

20 September 2016 / Posted in: Research

Dr Hassan Sobati, SMA Support UK Trustee and parent, shares his experiences of attending this US event.

Read full story