Up to 36 million people in Europe are living with a rare disease. The majority of rare diseases have neurological manifestations, involving central, peripheral nerve and muscle. Most rare diseases are associated with high unmet needs due to the lack of available and effective diagnosis and treatment measures. There is a relative lack of research to develop such measures, at least partly due to the low number of medical experts available for each condition and limited financial resources.
From a lack of available specialists to be able to give a timely and accurate diagnosis, to fragmented care pathways, there are too many gaps in healthcare systems for people living with a rare neurological disease to fall through.
Unfortunately, policy progress to date has been inadequate to support these efforts. As a result, rare neurological diseases rarely receive the attention they deserve from health systems and the policy and decision makers who shape them. This is exacerbated by the stereotyping, stigma, discrimination and isolation that face those living with rare neurological disorders owing to their symptomatic profile (for example pain, facial distortion, weakness and fatigue) and the failure to deliver policy to support rare neurological disorders, which are more prevalent in women than men. This means people with rare neurological disorders are often left without the care and treatment that they so urgently need.
But there is hope and strength in numbers. EU-wide cooperation and collaboration provides an opportunity to improve diagnosis and to encourage development of new treatments for people living with rare diseases.
Therefore we invite you to join in an open consultation on a call to action for rare neurology.
Please join us online on January 12th, from 11am to 12pm CET.