The main aim of the Peripheral Nerve Diseases Working Group is to facilitate and enable equity of rare neuropathy (genetic and inflammatory) care in adults and children throughout Europe. To facilitate this we are trying to accurately understand the expertise available across multiple sites in individual countries and to create a working rare neuropathy community together with our patient partners. We have collated current rare neuropathy guidelines, identified the gaps and put plans in place to update or develop new guidelines as needed. Our current project is to collate and agree the optimal outcome measures for individual neuropathies. We also are committed to education and research across Europe in rare neuropathies.

Management Group:

David Adams (France): Lead for TTR amyloidosis

Pieter van Doorn (Netherlands): Lead inflammatory neuropathies

Jana Haberlova (Czech Republic): Lead for rare paediatric neuropathies

Catharina Faber (Netherlands): Lead for rare painful neuropathies

Patient representation – Jean-Philippe Plancon, Daniel Tanesse, Francoise Pelcot (France)