As part of the first National Plan for Rare Diseases 2018-2022, the Ministry of Health launched the “Infoline Maladies Rares Luxembourg”, a first line of support, information and consultation for people affected by a rare disease, their loved ones and healthcare professionals. The establishment of this service has been made possible thanks to the collaboration and expertise of ALAN, which has been providing a consultation service that offers psychological counselling, as well as social and administrative support, to those affected by a rare disease for many years. Like the support services available to patients and their families in other countries in Europe, the missions of the Infoline Maladies Rares Luxembourg include:
- Facilitating access to information about rare diseases for patients, their families and healthcare professionals;
- Advising on available resources and steps or procedures to follow;
- Improving referrals to the appropriate services within the country;
- Offering a specialized and dedicated space for people to share their experiences;
- Identifying the needs of people living with a rare disease, to analyse the situation on the ground.
ALAN has been mandated by the Directorate of Health to accomplish the missions of the Infoline. The Infoline is organised into a dedicated phone (+352 2021-2022) and e-mail address (infolineMR@alan.lu), which is operational within defined time slots (Monday 13:00-17:00; Tuesday 12:00 to 16:00, Wednesday 09:00 to 13:00, Thursday 12:00 to 16:00, Friday 09:00 to 13:00). A reply is guaranteed within 5 working days. The Infoline does not provide counselling, healthcare or diagnostic services. It constitutes the first step in guiding people in Luxembourg affected by a rare disease towards the appropriate care and is part of a broader concept of establishing a ” Maison Maladies Rares “, which is another priority objective of the National Plan for Rare Diseases.