deutsch unter https://sickfluencer.de/studien-diskriminierung-seltene-erkrankungen/
The overall and deep discrimination of Rare Diseasers is shown by reports
There are a number of studies, both national and international, that are analyzing their difficult situation. It is therefore astonishing that they are ignored by authorities who are dealing with the issues the studies raise.
“There are over 6000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening.” – writes the European Organization for Rare Diseases (Eurordis, Factsheet “Equity for people with a rare disease”, https://download2.rarediseaseday.org/2020/Factsheet_Advo cating%20for%20equity.pdf). Over 72% of rare diseases are genetic.
Rare diseases are not rare. Due to the large number of over 6000 rare diseases, there are a total of about 3 million people affected in Germany (https://bcse.charite.de/).
What is a rare disease: https://en.wikipedia.org/wiki/Rare_disease
| international, european and national studies | diagnostic odyssey, misdiagnosis, doctors have no knowledge, travels to experts necessary | lack of equal access to care and health system | lack of care, medical treatment, research | financial vulnerability | social vulnerable and easy victims | isolation, career damage, daily obstacles, multiple problems |
| Rare Disease Day 2023 (rarediseaseday.org a project by Eurordis, https://www.eurordis.org/). | x | x | x | x | ||
| Eurordis, Factsheet “Equity for people with a rare disease” (https://download2.rarediseaseday.org/2020/Factsheet_Advo cating%20for%20equity.pdf). | x | x | x | x | ||
| German Ethics Council (Deutscher Ethikrat. Ad hoc Recommendation on Rare Diseases, https://www.ethikrat.org/fileadmin/Publikationen/Ad-hoc-Empfehlungen/deutsch/herausforderungen-im-umgang-mit-seltenen-erkrankungen.pdf). | x | x | x | x | x | x |
| Eurordis rare barometer survey “Juggling care and daily life: The balancing act of the rare disease community” (https://innovcare.eu/survey-juggling-care-daily-life-balancing-act-rare-disease-community/) | x | x | x | |||
| Ehlers-Danlos Society on EDSers | x | x | x | x | x |
Rare Disease Day 2023 “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!” (rarediseaseday.org a project by Eurordis, https://www.eurordis.org/).
“Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In healths systems designed for common diseases, patients, face inequities in accessing diagnosis, care and treatments.” (Eurordis, Factsheet “Equity for people with a rare disease”, https://download2.rarediseaseday.org/2020/Factsheet_Advo cating%20for%20equity.pdf).
The vulnerability, poor supply situation and insufficient knowledge of doctors regarding rare diseases are also described by the German Ethics Council (Deutscher Ethikrat. Ad hoc Recommendation on Rare Diseases, https://www.ethikrat.org/fileadmin/Publikationen/Ad-hoc-Empfehlungen/deutsch/herausforderungen-im-umgang-mit-seltenen-erkrankungen.pdf). Here it is also described that qualified specialist institutions are often difficult to reach. The German Ethics Council confirms that those affected are not only medically vulnerable, but also socially and economically. A rare disease is permanently acute and fraught with the most severe circumstances. “Like other vulnerable groups, people with rare diseases are at risk of not adequately compensating for their burdens and their interests not being sufficiently taken care of due to their marginalised position. In addition to the general ethical principles of respect for self-determination, charity and harm prevention, the principle of justice, understood as justice of empowerment and distribution, is also of great importance in their case.“ Their burdens must be adequately compensated because of the principle of justice, demands the German Ethics Council.
The Eurordis rare barometer survey “Juggling care and daily life: The balancing act of the rare disease community” (https://innovcare.eu/survey-juggling-care-daily-life-balancing-act-rare-disease-community/) states that rare diseases have a severe impact on everyday life, that the time and care costs are significant, and that the resulting weaknesses and task accumulation increase the burden, with a strong overall impact on work-life balance: absenteeism, damaged careers and economic difficulties.
For the underlying disease of all court cases:
The Ehlers-Danlos Society states that for EDSers, they “recognise (that) our community’ s experiences of inequality when it comes to race, gender, sexuality, age, body shape, mental health, disability, economic situation and other diversity factors … many around the world face a diagnostic odyssey: years and sometimes lifetimes, fighting for recognition, diagnosis and care.“ (The power of patient-led global collaboration, Bloom et al., Am J Med Genet C Semin Med Genet, 2021 Dec;187(4):425-428.) The Ehlers-Danlos-Syndrom is a high burden disease with many co-morbidities.
Visualisation after Eurordis rare barometer survey „Juggling care and daily life: The balancing act of the rare disease community“
(at the moment the english translation was not at hand)