The Northern Ireland Health Minister announced in October that £3.3 million will be invested to create a Northern Ireland Genomics Medicine Centre to provide an earlier and more accurate diagnosis for people with rare diseases, and was one of the first actions of the Northern Ireland Rare Disease implementation plan that was launched on the same day. The creation of this centre is a partnership with Genomics England, which aims to sequence the genomes of 100,000 patients with rare diseases. In England many people with ataxia have already had the opportunity to take part in the project, so now there is also an opportunity for people living in Northern Ireland. If you have ataxia of unkown cause you may wish to find out more and possibly take part once the centre has been opened (currently the date is unknown).
Ever wondered how a drug moves past clinical trials and into the hands of patients? This new interactive infographic from the European Commission details the different stages of drug development from clinical trials onwards.
Ataxia UK collaborative drug discovery programme with Pfizer used as an example of charity and pharmaceutical company partnership at Labour party conference
The Association of Medical Research Charities (AMRC) and Life Sciences UK invited Ataxia UK’s Research Project Manager, Dr Julie Greenfield, to present a case study on our recent collaboration with Pfizer. The talk was conducted at a breakfast roundtable discussion at the Labour party conference in Brighton on the 27th of September entitled ‘From innovation to adoption: why working in partnership delivers better outcomes for patients.’ This was an opportunity to highlight the important role charities, such as Ataxia UK, have in research and translating this into treatments for patients. The opportunity was also taken to make Shadow Ministers aware of some of the issues that are relevant to the ataxias, such as supporting specialist clinics for rare conditions in the NHS and facilitating research on rare diseases.
Dr Julie Greenfield talking at the Labour party conference.
Ataxia UK jointly funds a new SCA14 study
Jointly funded with the German charity DHAG, the study aims to find a way of accurately measuring the antioxidant glutathione, which is thought to be linked to SCA14.