The 2nd EUROPLAN National Conference took place on 8 November 2017 in Mamer, Luxemburg. ALAN – Rare Diseases Luxemburg was the organiser.

The conference highlighted the work of the Steering Committee (SC) – involving patients’ representatives – in charge of drawing up the national plan for rare diseases by the end of the year 2017. The draft plan is to be reviewed and validated by the Minister of Health before being ratified by the Government Council.

The conference also placed an emphasis on the following themes:

  • Social care and social services adapted to people living with rare diseases:

Progresses in this field have been made since the first EUROPLAN conference in 2013.

However, a lot of work remains to be done and obstacles to be overcome to provide all rare disease patients with satisfactory services, adapted to their needs.

ALAN is providing a socio-therapeutic consultation service; however, its resources are limited and cannot cope with increasing requests. The organisation would need to be better supported.

  • European Reference Networks (ERNs):

ERNs are virtual networks that bring together high-level experts on many (very) rare diseases across EU countries to facilitate and foster exchanges on diagnosis and care. These “ERNs represent a unique opportunity for Luxembourg since there is neither a sufficient critical mass of patients nor scientific expertise in the country to handle the rare diseases issues”.

Since Luxemburg is a small EU Country in terms of size and population, the participants discussed the idea of establishing a specific national structure (hub) gathering and mobilising healthcare professionals.

Read more: EUROPLAN Conference Report