Research Overview

One of the main aims of Euro-ataxia is to accelerate research and treatments for people with ataxia. This coordinated effort between our member organisations supports research in a number of ways, such as providing patient input and advice to research studies and assisting in the recruitment of participants to trials.

Euro-ataxia Patient Charter

Euro-ataxia believes that all ataxia clinical studies should involve the input of people affected by ataxia (patients and their parents or carers) and patient group representatives. Our Patient Charter outlines our vision for this, why it is important and proposes how it should be implemented.

This approval by the EMA will not result in approval in the UK, as an application still needs to be submitted to the UK regulators (the MHRA). We believe that approval in the EU will pave the way for faster approval in the UK. From January 1st 2024, the new fast-track route for approval of drugs in the UK (including Northern Ireland) was launched.

This is called the International Recognition Procedure and will be a fast-track for drugs that have already been approved in other countries (including by the FDA in the US and EMA in Europe). There are two routes, taking either 60 days or 110 days.

There are various criteria in order to determine which route will be taken. It is important to note that if the drug gets approved it then needs to be assessed for cost effectiveness by NICE to see whether it will be funded by the NHS.

Ataxia UK's Head of Research, Julie Greenfield, says "We are making every effort to encourage and support Biogen in seeking UK regulatory approval. In addition, we are discussing ways to cooperate to gather useful information from people with FA in the UK. This information is needed to help people get access to the drug if it is approved".

Read the press release from Biogen here.

Ataxia patient organisations united at the 2024 Euro-ataxia annual conference

Euro-ataxia, is the federation of 22 European ataxia patient organisations. The 2024 Euro-ataxia conference took place in London on 15th-16th November, organised by Ataxia UK. The conference was a great success; fourteen ataxia patient groups, as well as researchers and pharmaceutical representatives gathered to share best practice in healthcare and research.  Read a summary of the conference here, or view the presentations below.