Almost 1.3 million of people worldwide are living with a dysimmune inflammatory neuropathy (DIN).
Dysimmune-inflammatory neuropathies (DIN) are rare diseases still poorly understood, although they are potentially treatable.
To find new treatments, research is essential.
Some treatments, already known and very useful to maintain the physical autonomy of the patients, suffer from shortages almost everywhere in the world. Sometimes they are not accessible to patients at all.
Each 11June will be now be the WORLD DIN DAY, a day to make the public and decision makers aware of the existence of dysimmune and inflammatory neuropathies (CIDP, MMN, LSS, MGUS Anti-MAG, GBS, MFS…) and their burden on patients and their families. This day is also a great opportunity for all patient organizations around the world to gather around a common date and to bring the voice of patients to improve diagnostic management, access to care and more generally to improve the health-related quality of life for people suffering from DIN. Finally, this day offers the opportunity to ask health authorities and public decision-makers on the way people living with DIN are considered in each country.
ABOUT DYSIMMUNE AND INFLAMMATORY NEUROPATHIES
Dr Katherine Hall – Alexander the Great and GBS
Catherine Hall is a physician at the University of Otago in New Zealand. She has conducted historical research into the death of Alexander the Great. You will discover that the date of June 11, now dedicated to DIN DAY, was not chosen by chance…
Dr Teresinha Evangelista, Coordinator of the ERN for Neuromuscular Disorders EURO-NMD
Dr Teresinha Evangelista is a neurologist. She coordinates the European reference network EURO-NMD (neuromuscular disorders). She explains what ERNs are and discusses the integration of inflammatory dysfunctional neuropathies within the network.
Immune Globulin Therapies, historical development and futur perspectives. Dr Patrick Robert MRB
Immune Globulin Therapies, historical development and futur perspectives. A subject that is often known only to experts and yet is of real interest to people with DIN. Dr Patrick Robert from the Marketing Research Bureau, has a huge expertise is the domain of global plasma derive medicinal products.
Pr Eduardo Nobile-Orazio, neurologist offers a comprehensive overview of DIN
From Neuromuscular and Neuroimmunology Service, Milan University, Humanitas Research Institute, Rozzano, Milan, Italy Pr Eduardo Nobile-Orazio presents the DIN and sheds light on the subject with Italian examples.
DIN: description, monitoring, therapy and ongoing clinical trial. Overview by Dr Luis Querol
Dr Luis Querol is neurologist at Neuromuscular BCN Hospital de la Santa Creu I Sant Pau de Barcelona. He reviews different aspects of DIN. GBS, CIDP, Nodopathies ; MMN ; MGUS-Anti-MAG, Monitoring (wearable monitoring system, biomarkers), Therapy, Clinical trials (CTs) and ongoing CTs.