The topic of "rare diseases" is a matter close to our hearts at intermedix. For many years, our team has been working on shortening the often far too long diagnostic path of those suffering from the disease.
Last year, we already attracted a lot of attention on International Rare Disease Day with a major campaign under the motto "Rare are many, together we are strong!". This year, too, we would like to use February 28 to draw attention to the special circumstances of those affected and their families.
Facts about rare diseases
In Germany, around four million people live with a rare disease. One speaks of a rare disease if no more than 5 out of 10,000 people have this particular clinical picture. Around 80 percent of rare diseases are genetic and are noticed at birth or as a child. However, in some affected individuals, the disease does not develop until adulthood. In most cases, the disease is chronic and cannot be cured. As a result, affected individuals are dependent on medical treatment for the rest of their lives. However, the path to a diagnosis and a suitable therapy is often difficult.
Technologies to support physicians
The "WICOM Assist" application supports up to 65,000 physicians in the diagnosis of rare diseases. Prof. Dr. Daniel Gotthardt, explains in an interview how the application works as follows: "The "Rare Diseases" tool analyzes information in the digital patient file at the office-based physician completely automatically in the background. If the algorithm detects similarities with a disease pattern, the physician receives a context-sensitive indication of this and information for further clarification of the rare disease..."
Participation action 2023
On February 28, International Rare Disease Day, numerous campaigns are taking place to achieve greater acceptance and a general improvement in the situation of those affected.
We would like to continue our campaign from last year and call on all partners, customers and employees to participate with a donation to the Alliance of Chronic Rare Diseases e.V. (ACHSE).
ACHSE e.V. is the umbrella organization that represents the interests of people with chronic rare diseases with more than 130 patient organizations. The association also provides free advice to affected people, their relatives and doctors and therapists seeking advice on the subject of rare diseases and unclear diagnoses.
If you would like to help improve the quality of life of people with rare diseases, please support our fundraising campaign at ACHSE e.V..
As a thank you for your donation, we will send you a bracelet that identifies you as a "Rare Disease Supporter". To do so, please fill out this form. You are also welcome to order additional bracelets from us in exchange for an ACHSE e.V. donation. We would be happy if you post a picture with your wristband under the hashtag #RareDiseaseSupporter so that this topic gets the much needed visibility.