Connecting stakeholders of the Ataxia world to advance research and therapy development
The conference
The European Ataxia Conference was organized as a two-day hybrid networking event aiming to advance research and therapy development for ataxias, a group of rare neurological disorders affecting balance, coordination, and speech.
The conference was held in Pieria, Greece, on the 20 and 21st of May, 2023. More than 50 participants, patients, patient organizations, researchers, clinicians, and company representatives attended physically, and more than 20 followed the event online.
A networking event
The conference provided a platform for multidisciplinary stakeholders such as patients, patient groups, and the scientific community, to come together, share knowledge, and discuss new therapeutic approaches and research novelties.
The presentations focused on gene discovery, diagnosis, emerging and existing therapeutics, natural history, and biomarkers of ataxias. The main goal of the conference was to inform patients and patient organizations as well as bridge the gap between limited research and the development of effective treatments for patients with ataxias.
What are Ataxias?
Ataxias are a group of rare neurological disorders that affect balance, coordination, and speech. There are many different causes of ataxia. Many Ataxias are inherited conditions caused by defects in certain genes. The most common inherited progressive ataxia is Friedreich’s ataxia. Research is ongoing to identify other genes which cause inherited cerebellar ataxias and discover how they exert their effects. However, there are still many patients who do not have a specific diagnosis for their inherited ataxia. Despite recent research advancements, many forms of Ataxia have no treatment.
More information
For more information on Ataxias, please visit the EURO – Ataxia website
The full agenda of the meeting is available
Presentations are available here
Below you can find the recordings of the sessions:
- First session: Ataxias and research.
- Second session: Updates on the diagnosis and research of Ataxias.
- Third session: New Ataxia researchers and their research
- Fourth session: Patients and disease management
- Fifth session: Round table on Friedreich’s Ataxia current statues in Greece
- Sixth session: Updates from pharmaceutical companies
During the conference, interviews were held with different experts on various topics such as the new available treatment, diseases management and more. You can find the interviews here:
Dinopoulos Argyris, Associate Professor in Pediatric Neurology, “Attiko Hospital”, National & Kapodistrian University of Athens, Greece
Professor Marios Hadjivassiliou, Director at the Sheffield Ataxia Clinic, UK
Theodosis Lapatas, Secretary of the Hellenic Friedreich Ataxia Association, Greece
Vassilis Karatzias, President of Hellenic Friedreich Ataxia Association, Greece
Dr Helene Puccio, Research Director at Inserm in Lyon, France
Sue Millman, Secretary General of Euro-ataxia, UK
Andreas Nadke, President of Euro-ataxia, Germany
Dr Myriam Rai, Director of Global Relations and Initiatives, FARA, USA
Prof Paola Giunti, Lead Consultant Neurologist at the London Ataxia Centre, UK
The event was co-organized by HEFAA and EURO – Ataxia
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RDCOFUND-EJP N° 825575.