A disease is classified as “rare” if it affects less than 1 in 2000 people.
There are over 6000 different rare diseases. Many of them are of genetic origin, chronic and progressive. Rare diseases impact quality of life and can reduce life expectancy.
30000 people in Luxembourg3 diseases are pediatric onset7000 identified rare diseases
5 years to get a correct diagnosis
The disease has turned my whole life upside down. Without warning I was catapulted from the life of a carefree teenager to a completely different world.
If you look online Daniel fits the description of children with Angelman syndrome well. But what is not written online is that every child is different and has their own personality. Daniel taught me to value the simple things, which we may take for granted.
Since I was born, I have had asthma and lots of allergies. At 6 years old, I started having back and shoulder pain. But as you probably guessed, the doctors didn’t take me seriously.
Our social workers and psychologists provide free administrative and social support, as well as psychological counselling, to individuals and families affected by a rare disease.
We offer adapted physical activities, such as relaxation courses, yoga, aqua gymnastics or horse therapy, to our members to boost their well-being, confidence and self-esteem.
Choose your way to support our association!
We are able to offer our services thanks to the generosity and commitment of numerous individuals and organizations. Every gesture of support contributes to improving the quality of life of children and adults living with a rare disease.
May
No Events
