rare disease

Outcasts in German society: disabling, life threatening and economic burden of rare diseases not recognized

As many international studies and also the german Ethikrat put it (https://cripples-unite.de/discrimination-unknown-poor-situation-germany-rare-disease/): having a rare disease means facing multiple problems resulting in total exclusion from constitutional rights: 1. the subsistence level is not covered;2. many health costs have to be paid privately;3. in addition transportation and travel costs to see specialized doctors;4. and there are …

Outcasts in German society: disabling, life threatening and economic burden of rare diseases not recognized Read More »

Discrimination unknown: poor situation of persons with rare diseases and multimorbidity in Germany still not acknowledged.

The German Institute for Human Rights criticised the continuing inadequate implementation of the UN Convention on the Rights of Persons with Disabilities in Germany (https://www.zeit.de/gesellschaft/2023-08/deutsches-institut-menschenrechte-un-behindertenrechtskonvention-mangel). The lack of inclusion in schools and the lack of payment in working places which are designed to employ handicapped persons,  as well as the form of large residential facilities …

Discrimination unknown: poor situation of persons with rare diseases and multimorbidity in Germany still not acknowledged. Read More »