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Parama Pacientų Organizacijoms 2019
Pacientų organizacijos pavadinimas Organizacijos adresas Organizacijos šalis Sutarties data Veiklos aprašymas Nefinansinė parama Finansinė parama Atlygis už paslaugas
Asociacija "Kraujas" Santariškių g. 2 Vilnius LITHUANIA 01/03/2019 The objective is to provide support for association 'Kraujas to implement disease awareness project that seeks to inform about the newest and innovative treatments for myeloma and acute leukemia patients and their relative, also society, medicine specialists and health politicians. Planned activities: 1. Educational disease awareness project (10 900 Eur) Duration is 3 months and activities will be related to treatment possibilities for myeloma and acute leukemia patients and aiming to educate patients, to encourage their interest in the disease specifics and innovative treatment: • Preparation and dissemination of an articles in online media covering a story of a patient, including a doctor's and association's 'Kraujas' comments about treatment access in Lithuania, (4 articles x 1700) - 6800 euro. • Preparation and dissemination of a press release regarding the current treatment access for myeloma patients in Lithuania - 1500 euro. • Creation, preparation and publication of two internet banners: 'Know Your disease. March is declared as myeloma action month', 'Know AML': (2 x 400) 800 euro. • Preparation and layout of 3 infographics: 'Multiple myeloma at a glance', 'Myeloma treatment access', 'Acute leukemia - know the facts' (3x600) 1800 euro. 2. Focus group discussions (1 215 Eur) In order to better represent needs of oncohematological patients, it is planned to organize two focus group discussions. The goal of focus group discussions is to establish myeloma patients' educational and social needs in order to represent their interest better and more accurate and to find out what information about the disease patients need, what social and physical challenges they experience. There will be organized two focus group discussions: for newly diagnosed myeloma patients and for patients with relapsed myeloma. About association: 'Kraujas' is a non-profit, non-government organization unites more than 1500 patients with oncohematological diseases, also their relatives, medicine specialists and everyone who support the ideas of its activities, volunteering and bone marrow and blood donation - https://kraujas.lt/apie-mus/apie-bendrija/ Organization 'Kraujas' confirm that support given by the company 'Johnson & Johnson' would not make the main part of association's budget. Currently 'Johnson & Johnson' is the only sponsor for this project, but association is looking for other sponsors as well. - 12 115 EUR 0 EUR
15/03/2019 The objective is to support two representatives from association “Kraujas” to participate in the annual international event where patient's organizations share their experience and good practices from the whole Europe. In the event, association “Kraujas” will present its activities: myeloma information day that was held in 2018 and the book "Sexuality and oncological diseases" for people with cancer and their partners. The event will be held in Munich, Germany, on 15-17th of March - https://www.mpeurope.org/what-we-do/agm2019/ . Cost of the activity: 1482 euro. The sponsorship would be allocated to the following activities: • Accommodation expenses (3 nights x 157 euro, 2 persons x 471): 942 euro. • Travel expenses (Vilnius-Munich-Vilnius): 540 euro. Organization 'Kraujas' confirm that support given by the company 'Johnson & Johnson' would not make the main part of association's budget. - 314 EUR 0 EUR
29/05/2019 Purpose: To support association “Kraujas” for an annual conference „Blood day 2019“. This will be the seventh time the conference is organized by this association. Educational conference ‘Blood Day 2019’ aims to educate patients, their relatives, general practitioners, society and health politicians about achievements in the treatment of blood malignancies in Lithuania and worldwide. The project also seeks to draw society’s attention to cancer treatment issues in Lithuania: insufficient reimbursement, bureaucratic impediments, gaps in legislation that leads to a complex of problems for haematologists and patients with rare oncohematological diseases. Project details: • The conference will be held on 29th of May, 2019 in the Hotel „Holiday Inn” in Vilnius • Planned number of participants – 150 • Whole project cost – 12 476 Eur (5 000 Eur is requested from Janssen company) • Association "Kraujas" confirms that support given by Janssen company would not make the main part of association’s budget - 5 000 EUR 0 EUR
01/07/2019 The objective is to provide financial support for Patient Organization for the project "Psychological support and dissemination of science-based information to oncological patients 2019". The request is for partial support - 4551 Eur. The budget for the whole project is 19 551 Eur. The remaining amount - 15 000 Eur is paid by "Vilnius City Municipality". The requested amount of 4551 Eur would be used for: - 1671 Eur for project completion (as requested by Vilnius City Municipality to have 10% of private support for the project) - 2880 Eur for additional 4 educational seminars, which were the most appreciated by the patients. About the project: - project is dedicated to provide psychological and social support to oncology patients and their relatives. - psychological and social support will be provided by individual consultations (face to face, phone and internet) and seminars. About association "Kraujas": - non-profit organization since year 2002, that is connecting over 1500 members: oncology and oncohematology patients and their relatives, HCPs and volunteers, - https://kraujas.lt/. - 4 551 EUR 0 EUR
01/09/2019 The objective is to provide financial support to association “Kraujas” for educational-communication project “Days of awareness of blood diseases”. Amount requested by association is 14 814 Eur. About the project: Request from association "Kraujas" has been received to implement multiple activities for autumn disease awareness campaign, which aims to educate patients, their relative, general practitioners, society and politicians about achievements in the treatment of blood malignancies in Lithuania and worldwide. Planned activities: - Press conference on 19th of September at the LT Parliament - 2 articles with patients stories - 3 press releases about myeloma and myeloma treatment situation in Lithuania - 4 new stories in social project “Ambassadors of Courage” (www.drasosambasadoriai.lt) - Radio broadcast - TV reportage - Internet banned About association "Kraujas": - non-profit organization since year 2002, that is connecting over 1500 members: oncology and oncohematology patients and their relatives, HCPs and volunteers, - https://kraujas.lt/ - Association confirms that support given by Janssen will not make the main part of “Kraujas” budget - 14 464 EUR 0 EUR
Išsėtinės sklerozės draugijos T.Ševčenkos g. 12-5 Vilnius LITHUANIA 01/07/2019 Financial support in amount of 2692 Eur for patients organization Feniksai. This amount is dedicated to help organize educational program for society about people living with MS, to decrease stereotypes and to motivate MS patients. The project program include preparation of MS patients to participate in Trakai triathlon, meeting with the MS patient-athlete from Spain, film "100 meters" free view for MS patients other activities. Budget split is attached, proposals provided. - 2 692 EUR 0 EUR
20/09/2019 This is request to support PO for producing educational video materials to support patients through their MS disease journey. This is part of project "Multiple Sclerosis school of life 2019". These materials will be produced during camps and speakers will be the same as in these camps. Complete description of project, program of camps, as well as annual financial report and proposal for video production from partners are attached. - 2 500 EUR 0 EUR
Lietuvos išsėtinės skler.sąjunga A. Jakšto g. 9 Vilnius LITHUANIA 09/05/2019 Financial support for Lithuanian MS patients organization in amount of 5000 EUR in order to help organize European MS platform conference in VIlnius "Digital Health in MS Management". -The European Multiple Sclerosis Platform (EMSP) represents more than 700,000 people living with multiple sclerosis (MS) in Europe. -This event will bring together people with MS, experts and advocates in the field, MS societies across Europe, healthcare professionals, researchers and policy decision-makers. -The two days of the conference are designed to offer an insightful and dynamic mix of presentations, panel discussions and educational workshops. - Expert speakers will bring up-to-date with the latest research findings that directly impact the lives of people with MS and the ongoing MS initiatives at international and European level. - Several networking opportunities will allow to learn from best practices in the field of patient advocacy at scientific level. -This conference, represents another milestone towards common goal to improve the quality of life of people with MS in Europe and bring knowledge, inspire and empower! -The dedicated amount will be spend on transportation for MS patients from other cities to Vilnius and accomodation for 2 nights in the hotel for 50 members of Lithuanian MS patients association. -Detailed budget split and FMV evaluation are attached. - 5 000 EUR 0 EUR
26/08/2019 Financial support for organizing Summer camp - Life skills development for people with MS. During this event important issues for quality of life will be discussed, such as: improving emotional health, nutrition, the benefits of physiotherapy exercises. In interactive sessions with nurses adherence to treatment and communication with medical personnel topic will be addressed. Financial support of 2000 Eur is dedicated partially cover meals of the event. Detailed budget of the event and third party proposal is attached. - 2 000 EUR 0 EUR
Lietuvos sutrikusios psichikos žmonių globos bendrija Viršuliškių g. 34 Vilnius LITHUANIA 12/04/2019 The PO's request for 2000,00 Euro support for the implementation of 2019 projects consists of 4 events: 1. Conference “People with Disabilities Integration into the Labor Market and Social Business Opportunities in Lithuania”. Total requested 400,00 Eur 2. People with disability leadership and self-help training. Total requested 350,00 Eur 3. Management skills training for community workers and occupational room specialists. Total requested 350,00 Eur. 4. Quarterly magazine preparation and publication in year 2019. Total requested 450,00 Eur. Considering that requested support for “Management skills training for community workers and occupational room specialists” is not directly corresponding to the activities provided to contribute to the development and dissemination of information for and to patients as per specified in Framework. Due to this reason amount of 350,00 Euro is excluded for total requested (2000,00 Eur) and suitable to support amount set 1650,00 Eur. - 1 650 EUR 0 EUR
12/09/2019 Request from Lithuanian association of care for people with mental disorders for support of local adoption and printing of Schizophrenia Carer Playbook - 1 899 EUR 0 EUR
ONKOPSICHOLOGIJOS IR KOMUNIKACIJOS CENTRAS, VšĮ Trakų g. 9/1 Vilnius LITHUANIA 02/09/2019 NGO Oncopsychology and communication center was established in 2012. The main goal of the center is to ensure free of charge psychological support for oncological patients and their relatives. The goal of the project is to prepare and publish specialized educational booklets about blood diseases: - acute leukaemia (booklet of 56 pages) - multiple myeloma (booklet of 124 pages) - chronic lymphocytic leukaemia (booklet of 48 pages) Educational booklets will be prepared and revised in the collaboration with hematologists in order to provide the most important information about diseases and current treatment situation. Booklets will be given free of charge for patients in 3 centers in Lithuania and also to general practitioners. These educational booklets are very much appreciate by patients and are distributed very quickly. Requested support: 14 101 Eur. Organization confirm that given support would not make the main part of NGO Oncopsychology and communcation center budget. - 9 079 EUR 0 EUR
POLA A. Mickevičiaus g. 9 Kaunas LITHUANIA 01/02/2019 To support POLA in creation of patient led registry integrating ANDAMAN app to data collection, This registry will fill the missing gaps of National cancer registry, will collect broader data-set which will benefit all stakeholders, will provide opportunity to conduct open data projects with national e-health system (SVEIDRA, ESPBI IS). Registry will be created for 3 TA: Breast Cancer, Lung Cancer and Prostate Cancer and collect anonymized patient data. The outcome of data collected in the registry will give opportunity: 1) to the patients: to have all health records in one app, benchmarking with other patients in the country and abroad. Receive comments from HCP's 2) POLA: generate publications based on data in the registry in n peer-review literature jointly with HCP organisations 3) Payers:support medicines in reimbursement process and HTA with evidence-based data on patient preferences. Total project costs 106 kEur, POLA requests Janssen support for 25 kEur. Planned data points for collection: Age, Diagnosis, time of diagnosis, disease stage, co-morbidity, treatment details, AE, co-payments. etc. Note that this Project does not require the permission of the Bioethics Committee and the Project cannot be considered as a biomedical research as POLA will not receive patient personal data during the Project, and will not be able to find out the contact details of the registrants. Personalized data will be collected and managed by the manager of the Andaman7 program, i.e. third party. POLA will confirm the rules for processing the registry data during the project. - 25 000 EUR 0 EUR
Psichosoc. Onkolog. Asociacija Santariškių g. 1 Vilnius LITHUANIA 02/09/2019 Psychosocial Oncology Association (POA) provides educational activities in the field of cancer with the aim to ensure better life quality for cancer patients in psychosocial field. September is international Prostate Cancer awareness month and association is organizing disease awareness activities tailored to public on Prostate Cancer. Objective of this initiative is to educate public on prostate cancer diagnosis, treatment options, healthy living and support. - 4 800 EUR 0 EUR
Visuomeninė organizacija "Išmokime gyventi su vėžio liga" Santariškių g. 1 Vilnius LITHUANIA 02/06/2019 Patient organization" Išmokime gyventi su vėžio liga" initiates disease awareness in June starting on World Father's Day on June 2nd. The aim of the initiative is to educate the public about prostate cancer, treatment options and a healthy lifestyle, to help patients with prostate cancer to live fully, to help their relatives understand and support their loved ones fighting this disease and to get rid of the stigma of illness. Organization want to draw public attention to the issue of prostate cancer with the main slogan "Healthy Dad - A Strong Country" which will be highlighted in state and regional media - press, internet portals, radio and television. Project will be implemented by several stages: photography, articles, moving exhibition, dissemination. Total project costs are 13129,- Eur, request for Janssen support 6500,-Eur - 6 500 EUR 0 EUR