Training resources

Links

Dominant Ataxias
https://ataxia.org
Website of the National Ataxia Foundation USA: A lot of useful information on the disease, research, etc.
https://www.euroataxia.org
Website of euro-Ataxia, a European non-profit association whose member organisations work together to give people with hereditary ataxia as normal a life as possible
https://www.euroataxia.org/euro-ataxia-members
Members of euro-Ataxia (websites in different languages)
https://www.ataxia.org.uk
Website of Ataxia UK, the leading national charity in the UK for people affected by any type of ataxia. Ataxia UK fund research into finding treatments and cures, offer advice, information and support.
http://www.ataxie.nl
ADCA Vereniging Netherlands (information in Dutch)
https://ataxie-adca-sca.blogspot.be
Blog of our ePAG Cathalijne van Doorne containing information on dominant ataxia such as symptoms, research and general info (mostly in Dutch, some research articles in English).
Recessive Ataxias
http://www.curefa.org/index.php
Website of the Friedreich’s Ataxia Research Alliance, American website
https://fara.org.au/
Website of Friedreich Ataxia Research Association, Australian website
https://faraireland.ie/
Website of the Friedreich’s Ataxia Research Alliance Ireland
http://www.afaf.asso.fr/
Website of the L’Association Française de l’Ataxie de Friedreich (in French)
http://www.friedreichataxie.de/
Website of the Friedreich Ataxie Förderverein e.V. (in German)
http://www.bota-fa.se/
Website of the Swedish FA organization (in Swedish)
http://www.achaf.org/
Website of the Association suisse de l’Ataxie de Friedreich (in French)
http://www.atsociety.org.uk/
Website of the Ataxia teleangiectasia society, UK based (in English)
Huntington and Choreas
http://www.ehdn.org/hd-patients-families/
Website of the European Huntington’s Disease Network (EHDN)
http://eurohuntington.org/active-huntingtons/
Website of the European Huntington Organisation, resource about the importance and benefit of physical activity – the resource is developed by the working group of EHDN
www.hdbuzz.net
Website explaining news of Huntington research for lay people, patient and family oriented webpages with research news and information (different languages).

COURSES

International Summer School on Rare Disease and Orphan Drug Registries

The Summer School will consist of plenary presentations and interactive small group exercises, according to the Problem-Based Learning methodology. The course will provide participants with useful tools and methodologies to establish, manage and plan the activities of a patient registry with an overview of new approaches. More information can be found here.

Express Summer School

In this summer school, academics and patient representatives will learn about the regulatory processes of drug development and marketing approval in Europe with a strong focus on drug development for rare diseases.

Rare Diseases Summer School

Rare Diseases Summer School will focus on a wide variety of subjects in the arena of rare diseases, from disease mechanisms and animal models, to improving diagnoses, to novel therapeutics. There will be lectures and workshops on drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases. More information can be found here.

Golden Helix Summer School

This summer school constitutes a unique opportunity for researchers around the world to expand their knowledge in the rapidly evolving field of Genomic Medicine. More information can be found here.

European Paediatric Neurology Society

The EPNS has been organising training courses in paediatric neurology since 2003 specifically aiming at trainees but also qualified paediatric neurologists who want to refresh their knowledge on certain topics. The aim is to cover most main topics in the syllabus over a three-year cycle and to promote contact between individuals in the specialty in different parts of Europe. The course has a highly interactive character and participants are encouraged to bring (difficult) cases to discuss. More information can be found here.

European Academy of Neurology Spring School

The school covers a wide range of Neurological disorders. Participants can prepare their own cases for presentation and discussion, including video if appropriate and the patient has consented. Contributions to the optimal organisation of neurological care, neurological services and postgraduate education throughout Europe are presented.