In 2021, the Alström Initiative ( What is Alström Syndrome? ) was launched - literally on a blank sheet of paper. There was almost nothing about this rare, genetic disease.
No awareness , late diagnoses , no research , no structures , no organization for patients .
The goal was clear: to set up initial structures and to bring the disease into the public eye.
Notoriety
Through campaigns - partly supported pro bono by agencies - attention could be generated again and again in social media, but also in classic print media (e.g. the Frankfurter Allgemeine Zeitung), with mostly unconventional motifs or analogies.
diagnosis
Late diagnoses of rare diseases are not the exception, but the rule. There are no statistics, but it is assumed that the average diagnosis time is 4-8 years. Alström is no exception. Therefore, a petition was started to bring this issue to the attention of the public.
Compared to the usual approval figures for petitions, just under 800 signatures is not a lot; however, the effect of waking up those who actually have the responsibility to act was significant.
Research
The development of international networks is crucial - and not only in the field of rare diseases. Only by pooling all the available expertise can we be successful in the long term in understanding complex and rare diseases. The collaboration with European experts - supported by the University Eye Clinic Tübingen - represents a milestone.
Structures
A patient registry is an essential component in increasing the chances of developing a therapy. The collection and structured provision of data helps research, medicine and those affected. The Eva Luise and Horst Köhler Foundation for people with rare diseases supports us in this as part of the NARSE project.
Patient organization
After having succeeded in setting up the first sustainable structures and projects in just under two years, the time was "ripe" to take the next and most important step. To organize those of us affected - whether directly or as relatives. Only together can we take the next step! The non-profit organization behind the Alström Initiative, Branewo gUG, is one of the "founding members" of the association. This also ensures that the initiative works closely with the association.
Role of the Alström Initiative / Branewo gUG
The Alström Initiative forms the core of the activities of the non-profit Branewo gUG . It was founded solely for the purpose of supporting - or even initiating - activities related to the rare disease Alström Syndrome.
In addition to the successes described above, the Alström Initiative has also managed to collect donations. Some of these have already been given to the association, and some will be used in the future to support selected projects in the field of rare diseases/Alström syndrome. These projects will also be determined in consultation with the association.
The focus is on supporting long-term, scalable projects that can later also support the association's work. These include projects in the field of artificial intelligence, support for health start-ups or activities in the field of communication.
Goals of the Alström Initiative & Alström Syndrome eV
The goal is clear: We want a therapy for Alström syndrome.
Two areas are important on this path:
1. Finding all those affected and researching therapies
(simple graphic to illustrate this)
2. Building patient-centered physical and virtual ecosystems
(Every person should get the right help when he or she really needs it. Without endless searching.)
Cooperation and collaboration
The best - and most important - experience so far was not surprising: you can't do anything alone, you always need people and organizations who put themselves at the service of a good cause. We got to know a lot of great people along the way!
