The Cystinosis Foundation Germany is known as the \u201eCystinose Stiftung\u201c. It is a legally capable Foundation of Civil Law and is based in Munich, Germany. Motivation Ambition<\/strong> Purpose of the Foundation<\/strong> Advocate and supporter: <\/strong> Board:<\/strong> Patient Advisory Board:<\/strong> Foundation The Cystinosis Foundation Germany is known as the \u201eCystinose Stiftung\u201c. It is a legally capable Foundation of Civil Law and is based in Munich, Germany. Motivation Infantile nephropathic cystinosis is a very rare metabolic disease in which cystine is stored in almost all organs. Functional failures occur with increasing age and affect the kidneys […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":20,"comment_status":"closed","ping_status":"closed","template":"typo-listing","meta":{"_acf_changed":false,"footnotes":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/pages\/978"}],"collection":[{"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/comments?post=978"}],"version-history":[{"count":6,"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/pages\/978\/revisions"}],"predecessor-version":[{"id":1091,"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/pages\/978\/revisions\/1091"}],"wp:attachment":[{"href":"https:\/\/www.cystinose-stiftung.de\/en\/wp-json\/wp\/v2\/media?parent=978"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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\n<\/strong>Infantile nephropathic cystinosis is a very rare metabolic disease in which cystine is stored in almost all organs. Functional failures occur with increasing age and affect the kidneys and eyes, followed by the musculoskeletal system, the endocrine organs, and the central nervous system. Unfortunately, on the example of people suffering from cystinosis, experiences have shown that patients with such rare diseases \u2013 whether children or adults \u2013 have few advocates in health policy and in medical care. This is one of the reasons why patients with rare diseases are often referred to as “orphans of medicine”<\/strong>. In order to ensure long-term support for this patient group, the \u201eCystinose Stiftung\u201c was founded in 2015 in cooperation with the Cystinosis patient support group \u201eleben-eben\u201c.<\/p>\n
\nOur ambition is to directly support patients and their families in daily life, to improve clinical care and to support research projects that influence the clinical course of cystinosis.<\/p>\n
\nThe Foundation pursues exclusively and directly for charitable purposes. The purpose of the Foundation is to promote science and research, public health and public health care, education and vocational training.<\/p>\n
\nOrganization<\/h2>\n
\nMrs. Melanie Huml (Bavarian Minister of Health)<\/p>\n
\nMrs. Sonja Froschauer (1st Board of Directors)
\nMr. Dr. Arne Everts (2nd Board of Directors)<\/p>\n
\nThe Patient Advisory Board is provided by parents as well as patients with cystinosis. It is yet to be established.<\/p>\n
\nFoundation Board:<\/h2>\n","protected":false},"excerpt":{"rendered":"