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Magdeburg / Halle (dpa / sa) - The number of people who turn to the Central German Competence Network for Rare Diseases has fallen slightly in the past year.
About 250 patients or their doctors asked for advice, 300 were the year before, said the controller of the competence network, Katharina Schubert.
In their view, the decline could also be due to the corona pandemic, in which fewer people would have seen a doctor.
Some of the 33 centers for rare diseases have specializations, for example in neurological diseases or diseases in children.
Sometimes only doctors could turn to them.
The Central German Competence Network, founded in 2014, is also open to patient inquiries.
According to Schubert, the majority of inquiries come from those affected themselves.
The waiting time is currently around two to three months.
All centers for rare diseases want to make it easier for patients to get a diagnosis when general practitioners or specialists get stuck.
It will be looked at which diagnostics make sense and what needs to be completed in order to narrow down the problem more precisely.
To this end, teams of up to ten or twelve experts from various fields discuss a case.
In many cases, the patients still have a long history of suffering and thick files.
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A form of the disease is defined as rare if it affects no more than five in 10,000 people.
Around 7,000 to 8,000 different such diseases are currently recorded.
New ones are always being added.
Schubert does not know how many patients the competence network was able to help.
Since the recommended supplementary diagnostics are not always carried out by the specialist centers involved and there is not always feedback on the results, the cases often cannot be specifically followed up.
What is certain is that very few people looking for advice actually find a rare disease.
Schubert said there was still a lot of educational work to be done.
Just because there are many centers does not mean that they are known to all medical professionals.
And the financing of the centers is also very different.
While the work of some centers has already been included in the state hospital plan with fixed funding, elsewhere it is done on a voluntary basis.
The Central German Competence Network is financed by the AOK, among others.
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© dpa-infocom, dpa: 210226-99-600397 / 2
Central German Competence Network for Rare Diseases
Care atlas for people with rare diseases
Press release from the State Statistical Office of Saxony-Anhalt on rare diseases