Background

Rare diseases are often life-threatening and can cause chronic disability. Nevertheless, they are underdiagnosed and sufferers are left to fend for themselves. In total there are more than 30 million people living with rare diseases in the EU, in Germany some 4 million. Among these, around 100,000 people are affected by primary immunodeficiency, such as antibody-deficiency syndrome. Only around 700 have been diagnosed.

Rare diseases have, to date, figured only very marginally on the health policy agenda and in the discussions regarding reforms to the health care system. Even in medical circles, knowledge and education about rare diseases is often lacking.

Under the auspices of the German Self-Help Organisation for Congenital Immunodeficiency (Deutsche Selbsthilfe Angeborene Immundefekte, DSAI e.V.), many of those affected have joined forces in the campaign "Rare diseases − not at all that rare. Early diagnosis saves lives and reduces treatment costs" to inform politicians and the public about rare diseases, and in particular about primary immunodeficiency. Our campaign is supported by the Alliance for Chronic Rare Diseases (Allianz Chronischer Seltener Erkrankungen, ACHSE e.V.), the International Patient Organisation for Patients with Primary Immunodeficiencies (IPOPI), the European Organisation for Rare Diseases (EURORDIS), the European Federation of Immunological Societies (EFIS) and the German Society for Immunology (DGfI).

Our campaign aims to raise necessary awareness and to decisively contribute to an improved diagnosis and treatment of rare diseases, in order to improve the living standards of those affected and to contribute to improved and more efficient health care.

Rare diseases currently pose a big challenge for the health care system. Primary immune deficiency is a classic example of this. An early diagnosis of primary immune deficiency presents many advantages, both for the health and quality of life of those affected, as well as for the health care system, as unnecessary and unsuitable treatments can be avoided. In order to create an effective health care provision and to guarantee the wellbeing of the patients, politics, civil society and business must jointly assume responsibility.

For further details please refer to the Berlin Signal and our Background paper in our download section. To support our demands and to sign our petition please use our online form or the fax reply form to submit your signature. Thank you very much for your support!

 
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For further information on our campaign objectives please refer to following PDF documents:
Short Information/Support Form
Berlin Signal
Background paper

 
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