Coordinating Panel on Rare Neurological Diseases

Rare Disease Day 2017

On 28th February, the world celebrates the Rare Disease Day 2017, sponsored by Eurordis.

On 28th February, the world celebrates the Rare Disease Day 2017, sponsored by Eurordis.

As indicated on the Eurodis website “the main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.”

The main theme this year is research, that offers hope to patients living with a rare disease.

Rare Neurological diseases are a Pandora Box for Neurology and represent almost half of the total rare neurological disorders.

The recent European Commission approval of the 22 ERNs (European Reference Networks, see here), of which at least 4 are linked with Neurology, will improve the interchange of the different centers in Europe and the collaboration on diagnosis, care, and research.

Neurologists play a key role in recognition of rare diseases and lead on their management. Basic and applied neuroscientists are vital to implement research on RNDs pathogenesis and treatment. The EAN links these disciplines and is responsible for the promotion of knowledge, information, and research on these diseases within the European neurological community.

The EAN recognises the central role of neurologists in taking care of patients with RNDs, and the necessity of improving the clinical and research infrastructure. The EAN Scientific Committee has established a Task Force dedicated to RNDs, with the aim of helping patients with RNDs and their families, through raising awareness to facilitate earlier diagnosis, timely management and coordinating research. The Task Force on Rare Neurological Diseases will include several members from each EAN Scientific Panel and possibly delegates from patient organisations, which will develop specific aims to stimulate an increase the number of neurologists specialising in particular RNDs.