Slovenian lymphoma and leukemia patient association

Transcription

1 Slovenian lymphoma and leukemia patient association

2 Treating a serious disease represents a path to the unknown not only for the patient, but also for his or her relatives. Despite the plethora of information available, few patients really know what will await them on the road to detection, treatment and recovery after a disease. The Slovenian Lymphoma and Leukemia Patient Association, L & L (hereinafter: the L & L Association) has an important role in informing and helping patients in addition to professionals and relatives. Help and support is offered by the association s numerous members. We are happy to share our experience with anyone who asks for our help. The L & L Association unites patients with lymphoma, leukemia, multiple myeloma, myelodysplastic syndrome and other forms of blood diseases together with their relatives, friends and health professionals. We strive for the timely detection of disease, holistic treatment and care of the patient, for quality life with the illness and after it, and we help the patients relatives. We also endeavour for the promotion of health and a healthy lifestyle. The L & L Association currently has over 380 members from all over Slovenia. Since our haematological-oncological diseases or the diseases of our relatives differ, as do the experiences of detection, treatment and recovery after the illness, we can efficiently help each other at the meetings, we support each other and help each other carry the burden of the disease, we are joyful together of our well-being and quality of life during the disease or after it.

3 Activities of the L & L Association The L & L Association publishes and distributes informative brochures about diseases and treatment. In addition we organize individual and group meetings, excursions, lectures, workshops and roundtables. Each autumn we organise a national awareness raising campaign, we also cooperate in international campaigns, where we raise awareness, with the help of the media, about the importance of early detection of disease and timely treatment. We regularly and excellently cooperate with the oncologists from the Institute of Oncology in Ljubljana, with the haematologists from all Slovene hospitals, where the haematological patients are being treated and with numerous other professionals from other fields of health. In recent years, our important task was to monitor and encourage the construction of the new Clinical Department for Haematology of the University Medical Centre Ljubljana. Through various projects and actions, independently or in concerted efforts with other patients organisations, we endeavour to influence positively the Slovene health policies to be kinder to cancer patients. Kristina Modic, President of the L & L Association Phone No.: Milena Remic, Vice-president of the L & L Association Phone No.:

4 Members of the L & L Association Marinka Fojkar, Kristina Modic, Zdenka Izlakar, Milena Remic The success of numerous projects, actions and events for patients is related to the common efforts of the active members of our association, who invest in their voluntary work their knowledge from various fields of work, personal experience or the experience of their ill relative, in addition to their feeling of well-being and their sense for fellow human beings. Besides the president, Kristina Modic, and vice-president, Milena Remic, the following volunteers are also very active: Brina Žagar, Marinka Fojkar, Luka Konič, Jaka Cepec, Rok Justin, Zdenka Izlakar, Polona Kumelj, Nina Klemenčič, Andreja Verovšek, Matej Pečovnik, Boris Jeseničnik, and Ivan and Fanika Žličar.

5 Conversations in the office of the L & L Association The L & L Association has its office at Dunajska cesta 106, Ljubljana, where patients and their relatives can have a confidential conversation with members of the L & L Association. Occasionally, group consultation sessions with health professionals from the field of haematology, oncology and other health fields are also organised. In the office, visitors can find numerous informative brochures for various diseases. At the same time, the office is a place where the members develop new ideas for projects and activities and the premises where members who are interested in meeting other members meet and have pleasant chats.

6 Free counselling sessions with a professional At its office, the L & L Association has been organising free COUNSELLING SESSIONS WITH A PROFESSIONAL for the third year. These sessions enable patients and their relatives to consult a medical doctor in the circle of a small group of participants in the positive and calm environment of the L&L Association office. Here they can pose questions and express any fears they may have, and thus get to know whatever they have forgotten to ask their doctor in the clinic. Each counselling session lasts two hours; it begins with the introductory words by the medical doctor, followed by the questions of the participants and the common counselling session. Undoubtedly, the mutual exchange of experience with the professional support of the medical doctor additionally contributes to high quality treatment and recovery. Participation in the workshop is free of charge and open to everybody, both members and nonmembers of the L & L Association. Information about appointments in the scope of counselling sessions and with the professionals who lead the individual counselling sessions is available at the following website: Alternatively, call +386 (0) Website of the l & l association We kindly invite everyone interested in getting to know more about our activities to view the website of the L & L Association, where visitors can find information on

7 A website highlight contacts, diseases, their detection and treatment, as well as information about our association and its activities. Through the website, visitors can also find online forms with which visitors can order free e-publications about diseases and treatment or pose a question to a professional from the field of haematology, oncology and clinical psychology. We endeavour to forward the relevant publication or provide an answer to s as soon as possible.

8 Highlights from the Lymphoma and leukemia forum The website of our association also provides access to three online forums on the health portal Med.Over.Net, which is moderated and administered by members of the L & L Association on a voluntary basis. ONLINE FORUM FOR CHATTING AND ADVICE: - Lymphoma and leukemia - Legal advice for cancer patients - How to live with cancer

9 Informative brochures for patients and their relatives In the process of treatment, it is important for patients to cooperate closely with their medical doctors. In order to do that they need simple, up-to-date and professional information about their disease and their treatment options. However, medical doctors very often have limited time to talk to their patients. Following the initiative of the patients and in the cooperation with Slovene medical doctors and other health professionals, we have published several different patient guides: Guide for patients with non-hodgkin lymphoma (nhl); Guide for patients with hodgkin lymphoma (hl); Guide for patients with chronic lymphocytic leukemia (cll); Guide for patients with chronic myeloid leukemia (cml); Guide for patients with multiple myeloma (mm); Guide for patients with myelodysplastic syndrome; Neutropenia a frequent and undesired effect of chemotherapy. Free brochures are available on request at the haematological and oncological outpatient clinics or at the hospital departments of the University Medical Centre Ljubljana, at the Ljubljana Institute of

10 Oncology, at the University Medical Centre Maribor and at the general hospitals in Celje, Slovenj Gradec, Murska Sobota, Novo mesto, Izola and Nova Gorica. Print or e-versions of the guides can also be ordered at our association by filling in the online form on by sending an to or by contacting us via phone at +386 (0) International activities of the l & l association The L & L Association is also internationally active. We cooperate in numerous European projects and awareness-raising actions in the field of haematology and oncology. Their target group are the patients and wider public, and their goal is to transfer good practices from the practice and experience from abroad to the Slovene patients and public. We are also active at international conferences for patients and professionals, where we hold our own lectures and present our projects. At such conferences we regularly obtain information on the most up-to-date ways of detecting diseases, new medicines or forms of treatment and all that helps us to advocate in Slovenia the most up-to-date and quality treatment of patients with haematological diseases pursuant to the European guidelines. The L & L Association is a member of the following international organisations of patients associations: Myeloma Patient Europe ( CML Advocates Network ( and Lymphoma Coalition (

11 Become a supporter of the l & l You can support our projects and activities, the aim of which is to help patients and their relatives and to raise awareness about early detection of disease, treatment and recovery. You can support our efforts for the most up-to-date ways of detecting and treating diseases and our efforts for suitable premises for treatment, as well as our endeavours for up-to-date medicinal equipment. Slovensko združenje bolnikov z limfomom in levkemijo, L&L Povšetova 37, 1000 Ljubljana Bank account No. at Nova Ljubljanska banka: SI SWIFT: LJBASI2X Tax ID number:

12 SLOVENIAN LYPMHOMA AND LEUKEMIA PATIENT ASSOCIATION, L & L Office: Dunajska c. 106, 1000 Ljubljana, Slovenia Phone: +386 (0) Head office: Povšetova 37, 1000 Ljubljana, Slovenia limfom.levkemija@gmail.com Supporters of Slovenian lymphoma and leukemia patient association, L&L: