Last year, ALAN, Luxembourg’s association for rare diseases, received 40% more requests for support from affected patients and families than in 2020. 562 patients and their loved ones got in touch, according to the association’s 2021 report, which noted a particularly high increase in psycho-social counselling. The association said they believe the rise in contact to be in part due to increased awareness of rare diseases.
ALAN deputy director Gwennaëlle Crohin told RTL the 40% increase was a surprise at first, but further analysis shows it is fuelled by investment in raising awareness, in particular through the function of the Rare Diseases orientation and coordination cell, created as part of the national plan. Together with Luxembourg’s rare disease hospital centre, the association seeks to inform patients and guide them towards better care pathways.
Crohin added that the team could have benefited from expansion over the last few years in retrospect, to allow more requests for support to be processed. In spite of the association’s hard work, there are still slight delays in processing, particularly as the number of patients has risen recently.
The pandemic has also had repercussions on patients suffering from rare diseases, rendering their care and support more complex than in pre-Covid times. Crohin said this could not be underestimated, as the team had observed consequent repercussions on patients’ mental health, fuelling the demand for psycho-social counselling.
In 2021, ALAN intensified its awareness-raising efforts and expanded its national alliances, collaborating extensively with the government to defend the rights of its patients in light of the coronavirus crisis.
Crohin explained they had also mounted a series of campaigns to raise awareness, such as the “Light it up” initiative on Rare Disease Day, and the “Invisible Heroes” social media campaign, which sought to clear up prejudiced ideas and to draw attention to rare diseases.
In the Grand Duchy alone, an estimated 30,000 people suffer from a rare disease - in most cases, incurable.
