Founded in October 2005, Estonian Leukaemia and Lymphoma Patients’ Society is a non-profit and non-governmental organization aiming to unite all affected by the disease – leukaemia patients, their families, medical staff, health workers and supporters. The organization is patient-driven.
All over the world, patient organizations actively and successfully stand for patient interests. In Estonia’s developing medical and social landscape, patient movement has so far not yet achieved comparable strength.
Estonian leukaemia patients today have to deal with difficult issues and face serious concerns, including the availability of efficient leukaemia treatment, which is not on the same level of other developed countries. Awareness about patient rights is low.
Furthermore, until now only a small number of patients have been receiving necessary medicine free of charge as good-will by the producers because the government has refused repeatedly to compensate its high cost. However, the patients have from the beginning been told that this is a temporary solution and need a guarantee from the state as to the continuing availability of the necessary medicines for living. Additionally, new patients are not included in the program. All this has created a sense of insecurity towards the future for leukaemia patients.
Estonian Leukaemia and Lymphoma Patients’ Society was created to step forward and stand for the rights of patients. We aim to contribute to the health and well-being of leukaemia patients and stand for their right to receive effective individual medical care, improve their quality of life and prolong life expectancy. The goal of Estonian Leukaemia Patients Society is to promote the ideas and opinions of patients in decisions affecting their lives.
Estonian Leukaemia and Lymphoma Patients’ Society is full member of European Cancer Patient Coalition (since November 2005) and full member of International Alliance of Patients’ Organizations (since March 2006).