No rare disease awareness although the state of Berlin as first of the german states had implemented an antidiscrimination law- but it is not respected by municipal authorities

Its quite absurd, that the administration does not want to recognise the recently implemented Antidiscrimination Law of the city. In this case the responsible authority, the Landesamt für Gesundheit und Soziales (State Office for Health and Social Affairs Berlin), Lageso,  did not deny the discriminating act, but refuses to reimburse the immaterial damage.

Equitable opportunity and access to health care were lacking in the procedure of a disabled persons’s passport. A family doctor was charged to judge a rare disease but had clearly no knowledge of it. People with known diseases get their degree of disablity automatically. It is researched that persons with a rare disease will face disadvantages. Lately the Rare Disease Day 2023, which was held at 28th Feb pointed out that Everyone deserves equitable opportunities and access to health care. But for those of us with a rare disease, we are more likely to face misdiagnosis, treatment inequality and isolation!” ( a project by Eurordis,

Then a specialist was paid privately but was not to found on the spot. Altough the Deutsche Ethikrat describes this problem ( and the Lageso who has not found a specialist in Berlin itself and who has accepted the findings of this privately organised examination, still refuses to replace these costs.

Furthermore the Lageso does not want to compensate the discriminating act itself. Declaring somewhat diffusely that there was no damage. Meaning no harm is done when people are already sick? § 8 of the LADG ( states, that immaterial damages out of the discriminating act are to be repaid with money.

Obviously there is no will, no understanding and no sensibility what chronic illness is. Because all the mistreatment causes damage in the form of great stress and worsens the already frail health. It is perfidous and systemic- those who are affected should give up.

I am very disappointed, angry and deeply depressed how miserably one is treated.” says Birgitta Wehner who is suffering from the Ehlers-Danlos-Syndrome (EDS), “I am very weak and often bedridden and I shall fight for something what is indisputable. As the disability pension is low I did search legal aid at the Amtsgericht Berlin-Charlottenburg (Az. 210 C 368/22 ) which generally is financed by tax payers. I regard it as a waste of their money that the Lageso starts a court case although the § 8 LADG is clearly about that the discriminating act is to be compensated with money. I also have the feeling that there is no awareness and I fear this discrimination will continue for those of us who suffer from a rare disease.

In the Abstract of “Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome (EDS)” one can read “Aim: The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals’ as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care…. Results: After qualitative content analysis, the following five categories were identified: ‘Being ignored and belittled by health-care professionals,’ ‘Being assigned psychological and/or psychiatric explanations’, ‘Being treated and considered merely as an object’, ‘Being trespassed in one’s personal sphere’ and ‘Being suspected of family violence’. Consequences of these encounters were ‘Mistrusting the physician’ and ‘Risking bad health’. Conclusions: The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.” (Berglund B, Anne-Cathrine M, Randers I (2010) Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome. Disabil Rehabil 32(1):1–7,

The latest “Fourth Joint Report to the German Bundestag: Discrimination in Germany – experiences, risks and various constellations of circumstances” lists 6,413 enquiries (complaints, requests for help and requests for information) addressed to the Federal Government Commissioner for Matters relating to Persons with Disabilities, which is half of requests to the Commissioner for Migration, Refugees and Integration who accepted 12,929 enquiries during the reporting period (

There are about 36 million people with a foreign background ( and 7,8 Million people with a severe handicap (

These numbers tell you something about the treatment of disabled people which of course have every sex, gender, colour and status, but often belonging the poorer parts as working is not possible or is limited and treatment costs are outranging the normal additional costs which are not covered by insurances.

Birgitta Wehner plans to adress the responsible parts of the city government, which are the senate of justice, the senat of social affairs and the Person in public charge for the Disabled asking them what kind of sense a law makes which remains theory having practical consequences or which must be brought into validity with individual fights.

It remains to be seen if the Antidiscrimination Law of Berlin is just Woke Washing demonstrating political correctness (which german politicians are displaying so eagerly when abroad) but with no avail or real will to change something.

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