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.
For these reasons, a multi-stakeholder Rare Neurology Working Group came together recently to prepare the Rare Neurology Charter.
This multi-stakeholder charter has been developed by the patient advocacy community and healthcare professionals to drive open conversations about the unmet needs of people living with rare neurological diseases. The charter outlines high-impact policy solutions with the potential to transform the lives of patients. Building multi-stakeholder support for the identified policy solutions creates a strong platform to address and engage European and national policymakers on an action plan to transform the lives of patients. The hope for the charter is to serve as the foundation for a united call to action at the EU level to support the development of rare neurology action plans which will aid the expanding effective policy change across the rare neurological disease area.
This multi-stakeholder charter is a non-promotional publication. It was developed collaboratively by a working group of patient advocates and healthcare professionals, as part of a programme of work initiated by Alexion Pharmaceuticals, Inc and finalised by the European Federation of Neurological Associations. Participants in the initial working group were acting independently in their individual capacities as patient and clinical experts in the field of rare neurological disease. The Rare Neurology Working Group was comprised of:
European Federation of Neurological Associations (EFNA), The Sumaira Foundation, Associazione Italiana Sclerosi Multipla (AISM and EMSP), European Brain Council, and individuals from the Technical University of Munich, Ludwig Maximillian’s University of Munich, University of Oxford, Azienda Ospedaliera Universitaria Integrata Verona (AOUI Verona), the Institute of Neurology, University College London (UCL).
EFNA would like the following sponsors for their financial support towards this project:
Alexion, Roche, Novartis and Horizon Therapeutics.
You are invited to join an open consultation on a call to action for rare neurology!
Please join us online on Friday, January 12th, from 11am to 12pm CET.