Patients association for rare and undiagnosed diseases U.S.E.
Rare and undiagnosed disease? There are many people who suffer from suspicious symptoms, but never come to a diagnosis because they may suffer from a disease that occurs extremely rarely; From Undine syndrome to Ehlers Danlos connective tissue disease, we accompany people on their path to illness.
The purpose of the association is to promote and support people who suffer from a rare disease for which there is no association (in Austria) that covers it. Both to patients who have received a suspected diagnosis of a rare disease and are in the process of being diagnosed, or generally to patients with a complex disease path and complex symptoms that are life-limiting and / or life-threatening, are supported by our community and accompanied in the diagnostic process / treatment path. Their relatives can become members as well in order to be supported by us in dealing with the busy clinical picture. Before becoming a member, all of these persons are verified through a conversation with one of our association bodies or by a selected person / s. Individuals who make their own assumption of a rare disease, without medical suspicion, can receive advice from us, but do not automatically require a place in the association. The purpose of the association is also to spread understanding and popularize for the ignorant, but clearly pathological, of diagnosed and rare diseases, which are hardly populated and therefore receive little attention. These patients require representation – Which we would like to represent through our association activities as a community.
The aim is to facilitate cooperation between those affected, their relatives, as well as doctors, therapists and authorities, and to optimize comprehensive care. Psychological support is to be provided by a club. A kind of self-help group is supposed to support and encourage those affected through meetings in the course of their illness. The importance of a positive environment should be verbalized by our association, especially for doctors and other treating therapists, as well as relatives. Which is one of our main goals. As a long-term goal, the association should offer financial support for those affected, as well as support in discussions to adapt the working environment. Discussions in private surroundings for psychological help in clearing up the difficulties are also given.
This branch association is currently being created, more content will follow (…)