Making progress at the 10th European Narcolepsy Event in Bern.   

Elaine Armstrong, Chairperson and Trustee, Narcolepsy Ireland

Elaine Armstrong, Chairperson and Trustee, Narcolepsy Ireland

Recently I was invited to attend the 10th European Narcolepsy conference in Bern, Switzerland to represent Narcolepsy Ireland.
I travelled to Bern with my good friend and colleague Tom Matthews who was representing SOUND Ireland. Tom’s daughter has narcolepsy as a result of the vaccine pandemrix.

The European Narcolepsy Network (EU-NN) is a non-profit organization whose mission is to increase public awareness about narcolepsy and related diseases and to support initiatives in research, education and management to improve the quality of life for all affected persons. Over the years the EU-NN narcolepsy day has become a unique opportunity for scientists, patients, physicians and healthcare professionals to receive updates and exchange ideas and experiences

The EU-NN narcolepsy event has become a unique opportunity for scientists, patients, physicians and healthcare professionals to receive updates and exchange ideas and experiences.

NARCOLEPSY AND ITS BORDERLAND was the topic of this years event which took place on the 18th and 19th of May in Bern University Hospital, Inselspital.This educational event has gained a unique reputation for the quality of its programs and speakers.

Representatives of our national patient group Matt O’Neill and Leontien Sickenga along with EU Narcolepsy committee organised a workshop on the ‘quality of life in narcolepsy’.

With over 180 participants, 30 of them patients from all over Europe and beyond, we worked together in groups with the clinicians and scientists and discussed what we think is most important aspects to improve the life of a person with narcolepsy.

The 3 most popular topics that were chosen were

  1. Multidisciplinary approach and a more holistic approach from clinicians.

  2. Introducing the importance of sleep and sleep disorders into school curriculums

  3. The importance of exercise and sleep specialist working with getting their patients active. Daily activity also improves your mood, which is helpful to someone suffering from the emotional difficulties of narcolepsy.

A second session was held on Sunday ‘Patients questions and answers’ with the leading physicians and scientists in narcolepsy. There was basic science and clinical science lectures throughout the weekend.

Professor Emmanual Mignot and Professor Masashi Yanagisawa both received European Narcolepsy awards for their outstanding research contributions to the field of narcolepsy.

Professor Emmanual Mignot and Professor Masashi Yanagisawa both received European Narcolepsy awards for their outstanding research contributions to the field of narcolepsy.

Over the weekend we had a chance to meet up with many old friends with narcolepsy and make new ones. The experience of meeting other people that struggle the same way, is invigorating. It was two intense days of information, workshops and sharing but all very rewarding and educational.The EU-NN conference 2020 will be held in Berlin.

View The 2019 Program for  Narcolepsy and Its Borderlands

View The 2019 Program for Narcolepsy and Its Borderlands