Overview
Non-profit association Estonian Leukaemia and Lymphoma Patients’ Society (ELLL) was established in October 2005 and one of its first aims was to add Glivec (active substance imatinib) to the list of medicinal products reimbursed by the Health Insurance Fund. Within the framework of the campaign ‘For life’, support signatures were collected in shopping centres and during sporting events and sister organisations from other European countries sent descriptions of the experiences of those counties with the medicinal product to the government. In June 2006, the Glivec aim was achieved, and a year later the society began to represent lymphoma patients as well.
In 2009, information campaign ‘Tiredness breaks’ was carried out together with the Estonian Society of Haematologists and the Family Physicians’ Association of Estonia. The campaign drew attention to tiredness, one of the most common symptom of haematological diseases, and stressed the importance of early diagnosis.
In September 2019, during international blood cancer week, several events were organised in Tallinn and Tartu to increase the awareness of blood cancer.
The ELLL continues to provide information about haematological diseases and protecting patients’ rights. Now, the Society’s focus has widened: in addition to leukaemia, lymphoma and myeloma, it covers myeloproliferative disorders (a certain type of blood tumour).
Members
The members of the Estonian Leukaemia and Lymphoma Patients’ Society are patients with leukaemia, lymphoma, myeloma and myeloproliferative disorders, their family members, friends and healthcare professionals. The membership gives you access to the services offered by the Society as well as good friends to share your joy and worries. There is no membership fee. You can join here
Management
The Society is managed by the Management Board elected by the members at the general meeting. At the moment the members of the Management Board are Karin Kullama-Themas (member of the board since 2006), Ave Vaidla (nurse-adviser of the Haematology Centre at North Estonia Medical Centre, member of the board since 2015) and Kairi Jets (member of the board since 2021).
International activities
Full member of the (European Cancer Patient Coalition) since November 2005 and full member of the (International Alliance of Patients’ Organizations) since March 2006.