ASSOCIATION OF PATIENTS WITH BLOOD DISEASES Društvo bolnikov s krvnimi boleznimi Address: 30 Slovenska cesta, 1234 Mengeš Membership: 470 members from all over Slovenia Chairperson: Majda Slapar Executive committee: Majda Slapar – chairperson, Marjana Božjak – secretary, Mihaela Uhan – treasurer, Chief Physician Jožef Pretnar, M.D. – professional member, Matjaž Jurca – member THE ASSOCIATION OF PATIENTS WITH BLOOD DISEASES SINCE 1995 THE ASSOCIATION OF PATIENTS WITH BLOOD DISEASES TODAy The programmes that we carry out focus on helping the patient during and after treatment, giving information to the patient and caring for the newly acquired health. The Association of Patients with Blood Diseases was established in December 1995 on the initiative of patients, previous patients and medical workers at the University Medical Centre Ljubljana (UMCL), Department of Haematology. Patients and previous patients who had been diagnosed with one of the blood diseases, their relatives, friends and medical workers became members of the association. At the beginning the aims of the association were socialising, mutual help, selfless cooperation in the process of treatment, providing information on the disease and being there for patients and their relatives. In the coming years our initial aims and ideas developed and we have now become an indispensable part in the process of treatment. Our association plays an important part in making patients and general public aware of the disease. With its specific social programmes our association selflessly enters the processes of rehabilitation (be it work, medical, social or financial rehabilitation) of the patients as well as their families during and after treatment. OUR PROgRAMMES The first and foremost goal of the association has been offering help to patients and their relatives so that they can overcome difficulties faced with during and after the treatment, even more so when it comes to bone marrow transplant either at home or abroad. We have offered support, encouragement, advice and provided company to the patients who found themselves on the path we have managed to walk successfully. Another important role of the association has been informing patients about the illness and spreading the news about the problems patients with blood diseases encounter. Tax ID number: 26996855 Bank account number: 05100-8010144543 Patients should be given help to overcome the longterm treatment. By sharing our own experience, we can help them understand the situation better. Our programmes help ensure that patients as well as their relatives get what they have lost during treatment at least to some extent. For the past 17 years our office has been situated in Mengeš. Throughout this time, patients and their relatives have had opportunities to talk individually to a representative of the association, who is a previous patient, about everything they need to know. There are questions only someone who fell ill, went through treatment and got well, can answer. Telephone: + 386 (0) 31 649 735 (Majda Slapar) + 386 (0) 41 649 735 (Mihaela Uhan) • co-financing medical treatment or physiotherapy; • special social programmes for socially, financially and medically disadvantaged patients; • social relief and one-time education grants. 2. Co-funding the treatment of the side effects of stem cell transplantation Due to the aggressive treatment with chemotherapy and radiotherapy and the effects of stem cell transplantation, new medical complications can happen that decrease the quality of a patient’s life to a great extent. We help pay medical services that are not covered fully by the Health Insurance Institute of Slovenia. 3. Programme Patient to Patient – offering psychological support and advice to patients To help overcome difficulties patients must face when dealing with their illness, one of our members, a previous patient, visits the Department of Haematology at UMCL once a week and is there to answer any questions patients, or their relatives, might have. We are there every Thursday from 4 to 6 p.m. This programme has been running for 5 years. 4. Publishing texts and other publications E-mail: [email protected] Website: www.drustvo-bkb.si 1. Prevention programmes for healthy living, improving the quality of life and preventing negative consequences of treatment Geographic dispersion of members of the Association of Patients with Blood Diseases Membership of the Association of Patients with Blood Diseases since 1995 The first two publications were published in 1999 on the initiative of patients and in cooperation with doctors and other medical workers from UMCL. These were Adult Stem Cell Transplantation and Treatment with the Stem Cells of an Unrelated Donor, both providing patients with valuable information. Other publications: • The Association of Patients with Blood Diseases (2008) – a presentation of our association DRUŠTVO BOLNIKOV S KRVNIMI BOLEZNIMI AKUTNE LEVKEMIJE IN PRESADITEV KRVOTVORNIH MATIČNIH CELIC NAVODILA ZA BOLNIKE • Twenty Years of Stem Cell Transplantation in Slovenia (2009) Dopolnjena izdaja Mengeš, november 2013 • Acute Leukaemia and Stem Cell Transplantation (2011) – also comprises instructions for patients • A Guide to Chronic Myeloid Leukaemia (2012) VODNIK ZA BOLNIKE S KRONIČNO MIELOIČNO LEVKEMIJO • Almanac (2010) – published for the 15th anniversary of our association • Rare Diseases (second edition 2012, third edition 2013 and fourth edition 2014) Oktober 2012 • Two collections of lectures for Patient Day (2010, 2012) • Leaflets in English about our association (2012, 2014) • Leaflets in English about the organization of Rare Disease Day (2012, 2013, 2014) • Stories from the Sixth Floor (2013) – a book of personal stories by patients • Acute Leukaemia and Stem Cell Transplantation (2013) – a revised edition • Anaemia: A Guide for Patients (2014) DRUŠTVO BOLNIKOV S KRVNIMI BOLEZNIMI ANEMIJE VODNIK ZA BOLNIKE Mengeš, april 2014 1 EN 5. Joining and participating in similar international organisations In February 2014 we were accepted as full members of EURORDIS – the European Organisation for Rare Diseases. We are members of the Myeloma Euronet – European Network of Myeloma Patient groups. We attend the annual EBMT (European group for Blood and Marrow Transplantation) congress for patients and their families. On the initiative of European Patient Forum (headquarters in Brussels) our association is registered in the European Registry of patients with blood diseases. 7. Leisure activities and promoting healthy living We organise trips to different parts of Slovenia and abroad as well as other social events, where members can share their experience or simply enjoy different outdoor activities, such as hiking. Some even decide to participate in international sports competitions for transplant patients. A trip to the Goričko region, May 2012 Türk, the wife of the President of Slovenia at the time. In the latter two events the honorary patron was the current President of Slovenia, Mr Borut Pahor. Besides the representatives of different associations, other representatives participated at the events, namely the representatives of the Ministry of Health, doctors from the Department of Haematology and the Department of Paediatric Haematology-Oncology of University Medical Centre Ljubljana, representatives of the Health Insurance Institute of Slovenia, representatives of the Medical Chamber of Slovenia, a member of the EU parliament who is also a member of our association and representatives of numerous pharmaceutical companies and the media. Under the Haematology and Transfusiology section of doctors organised by the Slovenian Haematological Society and the Society for Transfusion Medicine we either organise or participate in Patient and Family Day. We organise formal lectures on a variety of topics: haemato – oncology, blood diseases and treatment, consequences of treatment, nutrition, fertility, psychological support, patients’ rights to health and pension insurance and different lectures on travelling. Members of the Association in the atrium of the European Parliament, Strasbourg, May 2013 Majda Slapar, Mihaela Uhan – EBMT, Milano, 2014 6. Providing information and offering consultancy We offer personal consultancy to patients and their relatives on our premises. We are glad to give advice on the phone or through e-mail. On our web page www.drustvo-bkb.si you can find information and publications about our association. It is updated regularly with all our events, the news and reports about our activities. 8. Organising Rare Disease Day and Patient Day in Slovenia for patients and their relatives In 2012, we organised the first Slovene Rare Disease Day. Twelve representatives of different rare disease associations gathered for this occasion. The event took place at Cankarjev dom in Ljubljana on 29th February – the European Rare Disease Day. This event was followed by two more events, in 2013 and 2014 respectively. Events of this kind take place in most countries of the EU on this day. The honorary patron of the first event was Mrs Barbara Miklič OUR AIMS: • the continuation and expansion of all regular programmes with the emphasis on special social programmes; • active participation in solving current issues of blood disease patients; • the publication of guides for patients about blood diseases and treatment; • informing patients about the novelties of blood disease treatment at home as well as abroad; • informing patients about their benefits from health and pension insurance; • consultancy and help with obtaining the status of a stem cell transplant patient; • supporting action to increase the number of stem cell donors; • joining and participating in similar international organisations; • informing patients about EU guidelines concerning rare diseases and organising events. The Association of Patients with Blood Diseases intends to follow all above mentioned aims, improve our programmes and ensure a successful continuation of our long humanitarian goal to offer support to all members of our association and their families and to those patients who are being treated for one of the blood diseases. PUBLICATIONS – HOW TO gET A COPy All publications are available at University Medical Centre Ljubljana (UMCL), Department of Haematology as well as the Polyclinic at 4 Njegoševa in Ljubljana. Hospitals throughout Slovenia where patients with blood diseases are treated hold copies. The publications are also in store at our office in Mengeš and you can order them by giving us a call or writing to us. All publications can be downloaded from our web page. CONTACT: 30 Slovenska cesta, 1234 Mengeš, Slovenija A HUMANITARIAN ASSOCIATION OF CHRONIC PATIENTS AN ASSOCIATION OPERATING IN THE PUBLIC INTEREST IN THE AREA OF HEALTHCARE Association of Patients with Blood Diseases 30 Slovenska cesta, 1234 Mengeš, Slovenia Telephone: + 386 31 649 735 (Majda Slapar) +386 41 649 735 (Mihaela Uhan) E-mail: [email protected] Web page: www.drustvo-bkb.si ASSOCIATION OF PATIENTS WITH BLOOD DISEASES Majda Slapar, Chairperson STATUS: In 2002, the association was granted the status of an association operating in the public interest in the area of healthcare, in accordance with a decision issued by the Ministry of Health of the Republic of Slovenia. In 2006, it was granted the status of a humanitarian association of chronic patients. The association joins patients with different blood diseases: acute and chronic leukaemia, lymphoma, disseminated plasmacytoma, aplastic anaemia, myelodysplastic syndrome and other rare blood diseases. Members of the association are patients and previous patients, their relatives and friends, and professional medical workers.