One of the most important topics is currently in focus: finding affected people
Why is that so important?
A simple calculation
Cases known today Germany (estimate, there is no official number!)
25
Prevalence Alström: 1:1,000,000, ie there should be more affected people in Germany:
80
Assumption: prevalence significantly higher (since the disease only shows its devastating symptoms with age) e.g. 1:250,000
320
320 cases instead of the estimated 25 – that would be a factor of 13 and a completely different requirement what relevance and Willingness to invest concerns!
The general approach
AWARENESS
Generate attention
Attracting attention is an essential part of the job. Many people do not know about the existence of "rare diseases" and which consequences arise for those affected, but also which opportunities arise from an intensive examination of this and similar diseases.
Because early detection can prolong life, even save it and, as a result, relieve the health system, from which everyone benefits. Understanding and, in the future, healing of this disease can only be achieved through knowledge and methods that can also help in many other areas.
​
But all of this requires the first steps - informing, involving and motivating to get involved with the topic. This is only possible with a good and broad media and communication strategy.
AWARENESS
Generate attention
Attracting attention is an essential part of the job. Many people do not know about the existence of "rare diseases" and which consequences arise for those affected, but also which opportunities arise from an intensive examination of this and similar diseases.
Because early detection can prolong life, even save it and, as a result, relieve the health system, from which everyone benefits. Understanding and, in the future, healing of this disease can only be achieved through knowledge and methods that can also help in many other areas.
​
But all of this requires the first steps - informing, involving and motivating to get involved with the topic. This is only possible with a good and broad media and communication strategy.
AWARENESS
Generate attention
Attracting attention is an essential part of the job. Many people do not know about the existence of "rare diseases" and which consequences arise for those affected, but also which opportunities arise from an intensive examination of this and similar diseases.
Because early detection can prolong life, even save it and, as a result, relieve the health system, from which everyone benefits. Understanding and, in the future, healing of this disease can only be achieved through knowledge and methods that can also help in many other areas.
​
But all of this requires the first steps - informing, involving and motivating to get involved with the topic. This is only possible with a good and broad media and communication strategy.