A disease is considered to be rare if it affects fewer than 2,000 people. In Luxembourg, an estimated 30,000 people - or 5% of the population - suffer from a rare disease. “These figures mean it is not rare at all,” says Daniel Theisen, director of ALAN, a Luxembourgish organisation supporting and advocating for those with rare illnesses.
There are between 6,000 and 7,000 rare diseases, which frequently results in delayed diagnosis for many patients.
“Patients often have to visit a number of different doctors before they are diagnosed,” says Theisen. “This means people frequently spend months, or even years, seeking help. This path of suffering is particularly hard to bear, as patients spend all this time living in uncertainty.”
Professionals within the medical field often do not always consider rare diseases when examining patients, says Theisen. The ALAN director believes this must be improved.
In the lead up to Rare Disease Day Lisa Burke talked about the mental health impact on the whole family and care-giving unit. Listen back to the interview on RTL Play.
