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://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

Website of the Friedreich’s Ataxia Research Alliance, American website

 

Website of Friedreich Ataxia Research Association, Australian website

Huntington and Choreas

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.

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.