Patient centered and interoperable registry hub for Rare Neuromuscular Diseases
Friday June 26 – Today, over 20 project partners from 7 organizations participated in the…
June 10, 2020
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Virtual coffee with patient organisations and Share4Rare
Research is at the heart of solutions for all patients. However, it is not always…
AFM – COVID-19 Guidelines Available
L’AFM-Téléthon, Association de Patients Française, et FILNEMUS , la Filière Neuromusculaire Française have developed a…
The position of neuromuscular patients in Shared-Decision-Making
ENMC highlights workshop report In 2018, ENMC held a special workshop on how to involve…
Renin–Angiotensin–Aldosterone System Inhibitors in Patients with Covid-19
The New England Journal of Medicine have recently published this special report on Renin–Angiotensin–Aldosterone System…
Rare disease community raises alert over discrimination in critical care guidelines during COVID-19 pandemic
EURORDIS urges immediate action and proposes concrete solutions 31 March, Paris – EURORDIS-Rare Diseases Europe…
Pulmonary Support for Myotonic Dystrophy Patients During COVID-19 Pandemic
NMD4c the neuromuscular network for Canada releases information regarding pulmonary support for Myotonic Dystrophy patients…
COVID-19: Care Recommendations for Home-Based Ventilation Patients
NMD4c the neuromuscular network for Canada releases recommendations for home based ventilation. As COVID-19 continues…
EMA advises continued use of medicines for hypertension, heart or kidney disease during COVID-19 pandemic
Press release 27/03/2020 EMA is aware of recent media reports and publications which question whether some medicines, for…
Guidance for the management of Myasthenia Gravis (MG) and Lambert-Eaton Myasthenic Syndrome (LEMS)
This article has been developed to offer guidance for those people who are affected by…
EU Commission launches “COVID-19 Clinical Management Support System”
On 24 March, the European Commission launched the “COVID-19 Clinical Management Support System” with the…
Covid-19 and people with neuromuscular disorders: World Muscle Society position and advice
Dr. Maxwell S. Damian, PhD, collated the World Muscle Society (WMS) Covid-19 advice (28th March…