Orphanet is a database of information on rare diseases and orphan drugs for all audiences. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases.
Orphanet includes a Professional Encyclopaedia, which is expert-authored and peer-reviewed, a Patient Encyclopaedia and a Directory of Expert Services. This Directory includes information on relevant clinics, clinical laboratories, research activities and patient organisations.



In November 2002, an international group of neurologists interested in the field of paraneoplastic syndromes (PNS) established the PNS Euronetwork supported by a grant from the European Union. The aim is to assist neurologists in the diagnosis and classification of Paraneoplastic symptoms by providing rigorous diagnostic criteria for the different conditions, to interchange information among the different centres, and to facilitate the pooling of patients for clinical trials.   This site contains a section on LEMS under paraneoplastic syndromes of the neuromuscular junction and muscle. 






European Society for Immunodeficiencies (ESID)

The ESID is a non-profit organisation which aims to facilitate the exchange of ideas and information among doctors, nurses, biomedical investigators, patients and their families concerned with primary immunodeficiency diseases and also to promote research on causes, mechanisms and treatment of these disorders.

Myasthenia Gravis Association – UK

The Myasthenia Gravis Association looks to promote of the welfare of sufferers from Myasthenia Gravis, Lambert-Eaton Myasthenic Syndrome and Congential Myasthenic Syndrome in the United Kingdom and the Republic of Ireland. The Association conducts fundraising, education and medical research.

Association Française contre les Myopathies (AFM) – France


The French Muscular Dystrophy Association has a single objective: to defeat neuromuscular diseases. It has set itself two missions: curing neuromuscular diseases and reducing the disabilities they cause.



AMIS – Association des Myastehiques

This association is dedicated to Myasthenia patients and their families with a news page, discussion forum and many other features.


Patienten Initiative LEMS

This website is the update of the previous German LEMS website www.lambert-eaton myasthenic--syndrom.de. It provides the opportunity for patients to enter into dialogue with each other.


The German Society myasthenia e.V.

This website looks to provide education about Myasthenia-Gravis and to raise public awareness of this disease.


AIM - Associazione Italiana Miastenia e Malattie Immunodegenerative

This association looks to receive and provide information, advice, support and friendship to myasthenia patients and their families.


AEM - Asociación Española de Miastenia

This society looks to increase awareness of myasthenic diseases to improve early diagnosis.