Leukämie-Online e.V. is an independent and vital virtual community for leukaemia patients in German-speaking countries. This web-based network provides support to patients by translating and reporting news about new research publications and various treatment options for leukaemia. The web site also provides knowledgeable information about different forms of the disease, about treatment options and a lot of background information necessary to talk to a patient's physician of choice. Members of the community can participate in a highly frequented discussion forum and ask questions, as well as share their own experience. They can also submit news articles to the web site, review books, suggest web links, or update the patient-friendly glossary on haematology.
Leukämie-Online was launched in April 2002 by Jan Geissler, having received his diagnosis of chronic myeloid leukaemia (CML), a rare cancer characterized by the presence of a chromosomal abnormality in blood cells, at the age of 28. At the time of Jan’s diagnosis, the only well-tested treatment options were stem-cell transplantation and Interferon-alpha. An experimental drug that had shown promising results in the US in patients with CML was also being tested in clinical trials in Germany. Jan joined one of those early-phase clinical trials.
Leukämie-Online e.V. has no commercial interests and is not-for-profit. The internet platform is funded by private donations, except the SMS reminder service. If meetings are held, additional educational grants are being sought. It has been developed, run and financed by patients, and is registered as a charitable organisation in Germany.
Even though the site is in German language only, the site provides links to organisations in English language, as the research reports in English language are a key source of information for Patients today. Our Web Links Database contains also references to relevant information in English language on the web.
|
Our Memberships
|
Leukämie-Online is also a founding member of the European Cancer Patient Coalition (ECPC) which was established in 2004 to represent the views of more than 300 cancer patient organisations from 42 countries in the European healthcare debate, and to provide a forum for European patients to exchange information. Jan is the Director of ECPC and has been vice president in the board of directors before. |
|
|
Leukämie-Online is also a founding member of the CML Advocates Network which is a worldwide virtual network of more than 50 non-profit organisations from more than 40 countries supporting patients with Chronic Myeloid Leukemia (CML) and their relatives. We do this by sharing knowledge and best practice, supporting campaigns, and educating advocates how to build and grow patient groups. The network is solely run by volunteers who are CML patients themselves. |
|
|
Leukämie-Online is a member of the Deutsche Leukämie- und Lymphom-Hilfe e.V (German Leukemia and Lymphoma Support, DLH). The DLH, founded in 1995, has become Germany's largest advocacy group representing patients with blood diseases and their family members. It provides local support groups in all major regions in Germany and has become very influential in representing blood cancer patients in various health policy forums in Germany.
|
|
|
English