eNAP (the European patient organization) is organizing a workshop where experts by experience (patients/family members) will discuss together with the medical experts present (physicians, researchers, etc.).
The starting point of the workshop is that there are specific challenges for people with narcolepsy/IH at every stage of life.
All conference participants are divided into separate groups. Each group focuses on a specific life stage, but the central question of each group will be:
“What is the biggest challenge for a person with narcolepsy at this stage of life?” The discussion will then focus mainly on who/what is needed to support this stage.
There will be 5 stages (2 groups for each life stage):
A – New Diagnosis
B – Young children (elementary school) up till around 15 years
C – Adolescents (secondary school and study)
D – Young adults (beginning career, partner, starting a family)
E – Adults (working life, retirement, family)
We want to create heterogeneous groups and try to have an even amount of experts by experience versus physicians/scientists, so there will be a limited number of places in each group.
Please choose in which discussion group you would like to participate in!