Welcome to the Patient tools & resources section of EURO-NMD
Here, you’ll find a selection of useful information, practical tools, and supportive materials to help anyone interested in neuromuscular diseases, including patients, families, caregivers, healthcare professionals, and researchers, better understand and manage these conditions.
Whether you’re looking for educational materials, care tips, support services, or guidance on patient care, this section has everything you need to help, inform, and guide you.
Explore the available resources and stay up to date with the latest in neuromuscular disease research and care. Our goal is to make useful, up-to-date resources easily accessible, all in one place.
Advances in Neuromuscular Research
These documents, written by AFM-Téléthon, are updated annually in June and provide an in-depth analysis of the medical and scientific discoveries made over the past 12 months across various neuromuscular diseases. The “Advances in Research” publications have been widely recognized for their quality, as acknowledged by several members of the neuromuscular community.
While all the publications are initially written in French, many have also been translated into English over the past 3-4 years. Each year, four “Advances in Research” documents are professionally translated into English to ensure wider accessibility. Additionally, the CMT (Charcot-Marie-Tooth) Advances have been translated into Italian, thanks to the support of the Italian association.
These resources aim to keep the international neuromuscular community informed and up-to-date with the latest research progress.
FR : https://www.myobase.org/index.php?lvl=search_segment&id=4
EN : https://www.myobase.org/index.php?lvl=etagere_see&id=551
IT : https://www.myobase.org/index.php?lvl=notice_display&id=81075
Fighting Diagnostic Odyssey in Rare Peripheral Neuropathies
Peripheral neuropathies are a group of disorders that affect the peripheral nerves, i.e. the nerves outside the brain and spinal cord. Peripheral neuropathies caused by a series of injuries or diseases that damage the peripheral nerves can lead to a variety of disabling and progressive symptoms mainly sensory, motor or dysautonomic. These may include balance problems, muscle weakness, increased fatigue and pain.
ERN EURO-NMD has produced a series of educational videos on rare peripheral neuropathies to raise awareness, primarily, among general practitioners; first line professionals who play a decisive role in patient care.
Rapid referral to a specialist in an expert centre will often reduce diagnosis wandering and, in some cases, enable appropriate and early treatment limiting the worsening of the disease and improving patients’ quality of life.These videos are also directed towards patients and their representatives, with the aim of providing them with as much information, recommendations, and good practice as possible.
This work contains patient testimonials and explanations from clinicians’ experts in the field of rare peripheral neuropathies, who provide detailed information about the care and treatment options available to patients.
EURO-NMD Patient Advisory Board Booklet
The Patient Advisory Board (PAB) is responsible for identifying and making suggestions regarding patients concerns and expectations on the remit of EURO-NMD.
The PAB will establish their own rules of procedures and Terms of Reference.
Details about PAB and Patient Representatives are available in this booklet below.