The Alstroem initiative aims to create structural improvements for the care of people living with rare diseases and to support research on these diseases – with the first priority of piloting and implementing them for Alstroem.
For this it is necessary to create attention in order to initiate the financing (through donations).
However, these important steps can only be the basis for the most important thing: the people affected by such a disease and their relatives. Only if this project is supported by many and filled with life and accompanied, it can be sustainably successful.
Now that the first steps of the initiative have been taken, we would like to take the next step and support the establishment of a patient organisation for Alstroem.
The first steps have been taken and we are confident that we will be able to report more details here in the foreseeable future.
The spectrum of such organization is extremely diverse. They can offer their members concrete information and assistance in dealing with their illness. Especially the aspect of networking and the exchange of experience is elementary.
Finding a community that faces similar challenges that can encourage and support itself is very important.
Almost unbelievable things could be achieved through the initiative of individuals who founded such an organization or found themselves in such an organization. Here are just three examples:
Of course, a patient organization is also of great importance for the representation of political interests and the representation in corresponding decision-making processes.
At this point, we ask for help in finding those affected who would like to join such an organization.
# BECAUSE WE CAN
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