One of the main objectives of Euro-ataxia is to share resources between members to promote best practice for the benefit of ataxia patients. The following are resources that we believe should be shared between carers, patients and professionals with ataxia.

 

Medical guidelines

Ataxia UK

Management of the ataxias: towards best clinical practice

The value of these Guidelines was recognised by the European Reference Network for rare neurological diseases, Nov 2018.

ADCA Netherlands

Information for GPs and physiotherapists

AFAF

Newsletter to Health professionals:

  1. Recommendations from experts in the field of ataxias and cerebellar or spinocerebellar degeneration
  2. Psychological follow-up
  3. Pregnancy
  4. Genetic counselling
  5. Management of spasticity
  6. Urinary problems in spinocerebellar disorders
  7. Role of the Physical Medicine and Rehabilitation (P.M.R) consultation
  8. Swallowing problems

 

European reference networks

In 2005 a taskforce started working on the European Reference Networks for rare neurological diseases. The intention of the network is to facilitate improvements in access to diagnosis, treatment and provision of high-quality, accessible and cost-effective healthcare for patients who have a medical condition requiring a particular concentration of expertise. The networks will also be focal points for medical training and research, information dissemination and evaluation.

On December 15, the European Commission approved the first 23 European Reference Networks for rare diseases (ERNs), including the one covering the ataxias, which is acknowledged to be one of the best examples. You can read their press release here:

First 23 European Reference Networks for Rare Diseases - A milestone for 30 million patients in Europe