Rare Disease Salzburg City: Salzburg Phone : +436645760320
in the province of Salzburg, the day of action launched by the EU takes place every year under the motto "Together for Rare" instead. Rare diseases are said to affect less than 1 in 2,000 people.
In 2008, "Rare Diseases West Austria" was founded by Klinefelter Syndrom Austria together with Orphanet Austria. "Together for Rare" is an interest group for people with rare diseases who would like to network with other people to give them more of a voice.
"Rare diseases are rare, but rare disease patients are numerous!
Often, the rare diseases are very serious diseases that require extensive treatment and care. They are very stressful for the patients and their families and sometimes lead to death in childhood or adolescence. The rarity of the individual diseases leads to numerous problems in research and patient care.
For people suffering from a rare disease, contact with other people is particularly important. Therefore, the corresponding self-help groups are of particular importance here.
The possibilities inquire at "Rare Disease Salzburg" for a self-help group or club.
Join a self-help group with a mixed topic. (eg parents of children with a congenital malformation ...). The most important contact persons are the individual self-help groups.
"Rare Disease Salzburg" has developed into a community of interest and contact point for people with "rare diseases" and their relatives in the province of Salzburg and West Austria.
For years, this community lives according to the motto "Together for the Rare" - a bridge between those affected and patients together with doctors, physicians, researchers and nursing.
On February 29, 2008 , the group was officially founded - "Together for the Rare".