POLITICS & INSTITUTIONS - ECONOMY

Rare disease sufferers in Luxembourg



Paperjam.lu

 

Up to 30,000 people living in Luxembourg have been diagnosed with a rare disease and the number is rising thanks to new diagnosis technologies and developments.

To mark World Rare Disease Day on 28 February, Luxembourg’s health ministry called for solidarity for sufferers in Luxembourg, for whom diagnosis and treatment can be complex given the lack of specialists because of the country’s size.

Rare diseases, of which there are between 6,000 and 7,000, will affect fewer than one in every 2,000 people.

In a statement published on Tuesday, the health ministry wrote:

“Despite the diversity and particular symptomatology of each rare disease, most patients have similar problems: difficulty of access to diagnoses, lack of scientific knowledge, lack of adequate care and therapies, lack of psychosocial support, expensive care and social consequences (isolation, school problems, reduction of professional choices, etc.).”

Luxembourg’s government is working on a five-year national plan to ensure access to quality and equal care, diagnosis and support for sufferers of rare diseases, the results of which will be published soon.

In Luxembourg, data on rare diseases is compiled by the Luxembourg association for the assistance of people with neuromuscular and rare diseases (ALAN).