Organizacje pozarządowe (NGO)
19th International EBHC Symposium
Shaping the future of sustainable healthcare
October 10-11, 2024 | Krakow, Poland
Lista organizacji
- The Alivia Cancer Foundation
- Fundacja Carita
- Foundation of Social Education
- Fundacja OnkoCafe – Razem Lepiej
- Platinum Team
- Beat Your Cancer
- SMA Foundation Poland
- MATIO Foundation for Families and Patients with Cystic Fibrosis
- Pacjenci.pro The Polish Cancer Patient Coalition
- Polska Koalicja Pacjentów Onkologicznych
- The Polish Association for People with AHC ahc-pl
- Polskie Towarzystwo Wspierania Osób z Nieswoistymi Zapaleniami Jelita “J-elita”
- Stowarzyszenie Mężczyzn z Chorobami Prostaty “GLADIATOR”
- Stowarzyszenie Neurofibromatozy Polska – Alba Julia
- Stowarzyszenie Wspierające Chorych na Chłoniaki “Sowie Oczy”
- Association of Healthy Polish Cities
Platynowa Drużyna (Platinum Team) familiarises us with what is rare.The Foundation was created to raise awareness and generate knowledge regarding orphan diseases. We especially address CLN (Batten disease).
What do we do?
- we educate on rare diseases – their role and social and economic significance
- we integrate ability with disability, showing that only together they become whole
- we run rehabilitation and development programmes for children
- we do scientific work in the field of healthcare system management and social security concerning rare diseases
- we cooperate with CLN patient associations from other countries.
Where you can find us?
- Pomeranian Region: Borzytuchom 77-141, ul. Jeziorna 21 (headquarters)
- West Pomeranian Region: Szczecin 71-004, ul. Cukrowa 8
Elżbieta Kozik founded PARS in 2009. We are an association which supports cancer patients and their loved ones at every stage of their treatment and recovery. We help them find their way in the oncological care system and receive the diagnosis and treatment they need. For that very reason, we have created a platform for cancer patients and their loved ones: centrumkryzysowe.org.pl. It aims at leading cancer patients and their loved ones through all stages of the diagnosis and cancer treatment. A dedicated helpline, where every caller will receive help and support, is operated alongside the Crisis Centre.
Infolinia: +48 22 105 55 30
Moreover, we support the patients and their loved ones in dealing with stress caused by the disease mainly by implementing the “Zdrowiej” (Get better) programme which is based on mindfulness and crisis coaching methods.
The aim of the association is to conduct activities which benefit cancer patients:
- Increasing the availability of medicine and oncological therapies saving lives and the access to specialists and hospitals.
- Dążymy do zwiększenia wiedzy pacjentów na temat ich praw i możliwości leczenia.
- Improving the quality and the standard of cancer care. top
https://www.ruchspoleczny.org.pl | https://centrumkryzysowe.org.pl
”J-elita” Association (j-elita.org.pl) is the largest organisation in Poland supporting patients with non-specific inflammatory bowel diseases: Crohn's disease, ulcerative colitis and microscopic colitis. It has over 3,500 members and has branches in 14 voivodeships. They publish free handbooks and a quarterly journal, organise rehabilitation stays, lectures and integration meetings, offer free psychological support to patients and their loved ones, support patients in difficult financial circumstances in the purchase of medicines, make donations to hospitals and strive for improved access to innovative treatment. top
Our organization – the Polish Neuromuscular Diseases Association was founded in Poland in 1989 and offers the support to the people suffering from genetically conditioned neuromuscular diseases, commonly known as muscle atrophy and dystrophy, as well myopathy, Amyotrophic lateral sclerosis (ALS) and more. The Association gathers patients and their families, doctors, physiotherapists, researchers and broad range of people who want to bring help and support to all NMD patients. The Association brings together over 600 members in one health centre at the Medical Academy of Warsaw. The main purpose of our organisation is to improve quality and life status of all NMD patients. top
Stowarzyszenie Onkologiczne SANITAS
Our association brings together people that care deeply about helping and supporting others. We believe that in the future, efficient prophylactics and health education will help reduce the number of people diagnosed with cancer too late. Hopefully, we will get rid of the harmful stereotypes and we will inspire people to start taking good care of their health and the health of their loved ones. Sanitas means HEALTH in Latin and the name itself brings to mind the city of Sanok and its river, San. Numerous events taking place around us resulted in the creation of “SANITAS”, the Association for Fight against Cancer. We have been active since 2011. In 2014, our association obtained the status of a Public Benefit Organisation (PBO). We do not employ people, everyone working with Sanitas and supporting the association does so voluntarily. Each of us has a day job, own family responsibilities, but we are ready to devote our free time, sometimes at the expense of other areas, in order to address the health needs of others. Our main goal is to spread awareness about the widely understood cancer prophylactics and to provide support to people who currently struggle with this disease or went through a cancer battle in the past, regardless of their gender or which cancer affected them. Apart from our fixed, recurring Actions, we put numerous spontaneous ideas into practice. We often meet the needs and match the expectations of the given moment. Every day, we pass various people on the street. Many of them have been affected by the same Problem. Numerous people fight the disease alone. The most important thing in the extremely difficult time that is experiencing cancer is not to be alone and left without answers to pervading questions. We are here to make sure that no one goes through these difficult moments alone and is left with their own thoughts and fears without any support. We help people reach specialists. We help the loved ones of people suffering from cancer who often feel powerless and confused. That is why we are here. To help understand and go through these moments. top
Stowarzyszenie „Słyszeć bez granic"
The Hearing Without Borders Association was established on the initiative of parents of hearing-impaired children, bringing together people with disabilities and their families, as well as specialists in various fields, including those related to hearing loss. The association acts for the benefit of people with hearing disabilities regardless of their age, including those with multiple disabilities, provided that impaired hearing is one of them. The association cooperates with communities connected with hard-of-hearing people, including activities popularising knowledge on treatment, rehabilitation and education. Moreover, it has significant influence on legislative processes concerning improvement of quality of life of people with hearing impairment, including people using auditory implants or those considering implant placement. The association has the status of a public benefit organisation. top
Onkofundacja Alivia
The Alivia Cancer Foundation has been supporting cancer patients for 14 years and encouraging them in their fight with cancer. Its aim is to ensure that everyone has equal access to the best cancer care. The Foundation provides free portals such as: Alivia Onkoindex, Alivia Onkoskaner, Alivia Onkomapa, all supporting patients in making informed decisions about the treatment process. The Foundation defends the dignity of patients with malignant tumours wherever their rights are violated. Since 2010, it has donated more than PLN 40 million to cancer patients to cover treatment costs not reimbursed by the Polish National Health Fund. top
The MS–FIGHT FOR YOURSELF Foundation [Fundacja SM–WALCZ O SIEBIE] has been bringing together the multiple sclerosis patient community, their families, and friends for 13 years. Every year we are seen and heard on TV, on the radio, in the press, outdoor advertising and on the Internet. We work extensively in the area of PR, present our work and research panels at scientific conferences and trainings for medical staff. We enjoy the trust of leading clinicians in Poland. We are also active on social media – FB and X (formerly Twitter). Our Facebook page has 12,000 active fans.
We participate in meetings of the Parliamentary Group on MS and the Parliamentary Group on Neurological Disorders. For years, our work has had substantial impact on the situation of MS patients in Poland, it is respected by state administration units; additionally, our social research is used by clinicians, system experts, and the media. top
Foundation was established in 2004 at the initiative of Father Dr Arkadiusz Nowak. The Institute's activities are primarily focused at supporting systemic solutions aimed at improving the situation of patients, increasing civic awareness of pro-health attitudes and influencing the shaping of the national healthcare policy. The Institute also undertakes activities to integrate the environment of patients' organisations and organises regular meetings with key experts in the area of health care, takes an active part in public consultations, and conducts advocacy in cooperation with patients' organisations. The scope of the Institute's activities also includes advice and support offered to non-governmental organisations working for the benefit of patients. The Institute also develops reports and analyses on current health and patient rights issues. We cooperate with approx. 300 different patient organisations from across Poland and with healthcare experts in Poland and abroad.
The mission of the Institute for Patient Rights and Health Education is to support systemic solutions aimed at improving the situation of patients and to influence the shaping of pro-health attitudes among Poles. In its activities, the Institute puts into practice the idea of a multifaceted partnership.
The vision of the Institute for Patients' Rights and Health Education is to remain a credible, transparent institution, open to the needs arising from social diagnosis. In its activities, the Institute will strive to further consolidate and professionalise the sector of non-governmental organisations working for the benefit of patients, so that they become an important partner in the decision-making process in the healthcare system. We operate on the basis of the Charter of Good Governance Principles.. top
Social initiative created by independent medical experts in Poland. Our goal is for everyone everywhere, regardless of their age, to be able to benefit from vaccines, which will result in improved health and general well-being of the population. Our wish is to direct attention of the healthcare system to primary prevention of infectious diseases and provide a general and equal access to vaccines and vaccinations at each level of the healthcare system. top
Our Association supports patients diagnose with CML (Chronic Myelogenous Leukaemia), blood cancers and other cancer patients, their families and loved ones. Our goal is also to support the elderly and people with disabilities.
We organise trainings and awareness campaigns related to the disease and modern treatments for leukaemia. We participate in the work of national and international organisations dedicated to combating cancer. However, our primary goal is ensuring that our patients have full, equal and cost-free access to the best treatments and medicines in order to help them win against their disease. Anyone who contacts us is sure to receive reliable and comprehensive information; we help them contact other patients who have experience with the same disease and treatment. Additionally, we organise the Association’s regional gatherings, carry out promotional and artistic activities and hold cultural, entertainment, and sporting events. top
- raising funds for the purchase of diagnostic equipment and medical equipment for treating patients,
- helping with the supply of medicines,
- informing and educating patients and their loved ones in the field of blood cancers,
- improving the conditions of hospitalisations,
- promoting bone marrow donation. top
Retina AMD Polska is an association founded 25 years ago by people losing their sight due to various retinal and macular disorders with the aim of:
- collecting and disseminating knowledge about treatment and rehabilitation options,
- facilitating early detection of these disorders
- putting pressure on access to modern therapies.
- advocating for ensuring equal access to treatment to every Pole.
The association’s activity consists mainly in social actions such as:
- popularising knowledge through the website www.retinaamd.org.pl and social media, including broadcasting a podcast called “OKO RADY” on YouTube,
- preparing educational materials: brochures, videos
- supporting and advising patients and their loved ones,
- organising meetings for patients, conferences, and social campaigns,
- monitoring the efficiency and availability of particular medical services in ophthalmology,
- organising campaigns, conferences, and seminars,
- auditing situations of patients with particular disorders and preparing reports. top
The Polish Alzheimer's Association is a patient organisation that has been operating since 1992, supporting both patients and their caregivers. We mainly work with caregivers of people with dementia, providing them with consultations, advice, support groups, and lectures. We do this through in-person consultations, over the helpline, and via e-mail correspondence. We take part in conferences and give media interviews. Additionally, we participate in campaigns related to Alzheimer and publish guides for caregivers.
We also reach out more widely to Polish senior citizens with our activities to encourage prevention of dementia-related diseases (physical and mental activity, healthy lifestyle, healthy nutrition, social activity). That is why the Association works closely with the Civic Senior Citizens' Parliament, an organisation that brings together Senior Citizens’ Councils, pensioner associations, Universities of the Third Age and patient organisations. top
In our vision of the world, every child and teen suffering from an oncological disease will overcome it and will have a chance for a healthy and happy life. We have been taking care of children and teens diagnosed with cancer, as well as their loved ones at every stage of the treatment continuously since 1991 as the Saving Kids With Cancer Foundation. We provide access to worldwide developments in paediatric oncology and to the latest treatment methods. Moreover, we provide psychological, pedagogical, and social support. We conduct and fund scientific research, develop knowledge for the swift diagnosis and effective treatment of cancer patients, and for the improvement of the quality of life of recovering patients. top
Polish Endometriosis Foundation was established at the end of 2018 by Lucyna Jaworska-Wojtas. We have been working for the benefit of the female patients for 5 years. Our mission is to promote the prevention and treatment of endometriosis, to initiate pro-health social events, and to provide support to women struggling with this condition and their families. As a patient organisation, we have created the Proposal Team for solutions for Diagnosis and Treatment of Endometriosis at the Ministry of Health and we are currently working on the patient pathway and pricing of services. We aim to establish centres for the diagnostic and treatment of endometriosis in the Polish healthcare system starting from 2025. Moreover, we collaborate with local and central government authorities in organising initiatives to promote preventive health care. You might have also seen us at health-promoting events in Gdynia or Poznań. We also perform and organise live and on-line meetings with endometriosis specialists.
We increase awareness of the topic in the media – we make appearances on TV and radio programmes, newspapers, and podcasts. What is more, we promote and sponsor book publications on endometriosis.
Współdziałamy z władzami samorządowymi i rządowymi w inicjatywach mających na celu promocję profilaktyki zdrowotnej. Mogliście spotkać nas na prozdrowotnych wydarzeniach w Gdyni czy Poznaniu. Występujemy i organizujemy spotkania ze specjalistami od endometriozy na żywo oraz online. Szerzymy świadomość w mediach – występujemy w programach telewizyjnych i radiowych, gazetach, podcastach. Promujemy i patronujemy książkom poświęconym tematyce endometriozy. top
Polskie Towarzystwo Walki z Mukowiscydozą to największa i najstarsza organizacja pozarządowa wspierająca chorych na mukowiscydozę oraz członków ich rodzin. Od ponad 37 lat zabiegamy o to, by jakość życia chorych była coraz lepsza i bliższa standardom europejskim. Obecnie opiekujemy się blisko 1500 beneficjentami w całej Polsce.
Pomagamy zarówno dzieciom jak i dorosłym
Wspieramy chorych w zakupie leków, suplementów diety, specjalistycznych wysokokalorycznych produktów żywieniowych oraz pokrywamy inne kosztach związane z leczeniem i rehabilitacją. Prowadzimy nieodpłatną wypożyczalnię sprzętu medyczno-rehabilitacyjnego i pomocniczego, zapewniającą dostępność urządzeń rehabilitacyjnych dla podopiecznych.
Walczymy o lepsze warunki leczenia
Podejmujemy liczne działania ukierunkowane na wspieranie rozwiązań systemowych dążących do poprawy warunków leczenia pacjentów z mukowiscydozą. Nasze aktywności obejmują również projekty wspierające ośrodki zajmujące się leczeniem chorych na mukowiscydozę w całej Polsce.
Zapewniamy rehabilitację
Prowadzimy liczne projekty kompleksowej rehabilitacji, rehabilitacji przez sport oraz treningów samodzielnego funkcjonowania chorych w ramach projektów dofinansowanych przez PFRON oraz projektów samorządowych, a także ze środków własnych. Dzięki temu nasi podopieczni mają zapewnione zajęcia z fizjoterapeutami, psychologami, dietetykami.
Edukujemy i zabiegamy o lepsze zrozumienie choroby w społeczeństwie
Organizujemy warsztaty, szkolenia, konferencje i wideokonferencje, poradnictwo online oraz bezpłatną infolinię dla chorych na mukowiscydozę w zakresie rehabilitacji, żywienia, pomocy prawnej, psychologicznej. Zapewniamy dostęp do najnowszych informacji z zakresu kompleksowego leczenia mukowiscydozy. Wydajemy kwartalnik „Mukowiscydoza” w nakładzie 2000 egzemplarzy dedykowany wszystkim chorym oraz członkom ich rodzin. Podczas naszych wydarzeń charytatywnych, takich jak np. organizowany co roku Bieg po Oddech, promujemy aktywność fizyczną jako istotny element codziennej fizjoterapii chorych, szerzymy też wiedzę o mukowiscydozie. top
The WE the Patients Foundation was established in 2012 to support the participation of patients in health care decision-making and to provide patient organisations with expertise and thus with the possibility to successfully communicate their problems and needs and to efficiently influence their implementation in health policies run by public administration. The Foundation is a think tank active in heath care, analysing the needs of patients and citizens, providing decision-makers with constructive suggestions of systemic solutions meeting these needs. The aim of the Foundation is to build cooperation platforms between the public administration, patients and patient organisations, doctors, the academia and business in health care. top
https://mypacjenci.org/
- edukacja pacjentów i społeczności lokalnych poza ośrodkami wielkomiejskimi dot. codziennych zdrowych nawyków i stylu życia wpływających na stan zdrowia,
- promowanie pierwotnej i wtórnej profilaktyki w zakresie chorób cywilizacyjnych,
- promowanie dostępnych narzędzi i portali edukacyjnych (NFZ i MZ).
The activity of the “Let’s stay together!” Association (called “3majmy się razem” in Polish) is based mostly on the volunteer work of its members, many of whom have had inflammatory connective tissue diseases for years. They know best what problems young patients and their families face, what they need, expect and lack and what else can be done for them. The goals of the Association include: social integration of patients with inflammatory connective tissue diseases, disseminating knowledge about these diseases among patients and in their social environment, as well as coming together to overcome access barriers to new information on therapeutic possibilities for systemic connective tissue diseases. top
The Association’s activities are focused around social assistance, charitable initiatives, health care and rehabilitation. It was founded spontaneously as a response to the needs of cardiac patients. The Association implements its statutory objectives by: conducting activities aiming at improving the quality of life of persons after open-heart surgeries, propagating a healthy lifestyle, establishing contacts between patients, and eliminating loneliness in sickness. top
The Heart at Banacha Association (Stowarzyszenie Serce na Banacha) is a non-governmental organisation. In the pursuit of its statutory goals, the Association:
- raises awareness about treatment possibilities among cardiovascular disease patients,
- takes care of patients with cardiological diseases in their fight against the disease,
- takes socio-informative actions in the scope of primary and secondary prevention of cardiovascular diseases,
- exchanges experiences and insights with other organisations and institutions, both in Poland and worldwide.
The Association cooperates with health centres across Poland and in Europe. Additionally, the Association is a member of a global organisation that aims at, among others, improving the quality of patient treatment and strengthening the prevention of cardiovascular diseases. Visit our website https://sercenabanacha.org.pl where you can find interesting information about what we do and how cardiovascular diseases can be prevented.
Visit our website https://sercenabanacha.org.pl, where you can find interesting information about what we do and how cardiovascular diseases can be prevented. top
Fundacja STOMAlife
Fundacja STOMALife to zarówno ludzie jak i przestrzeń. Dobrzy ludzie i dobra przestrzeń. Przestrzeń, w której wszyscy czują się ludzko i bezpiecznie i gdzie nikt nie jest wykluczony ze względu na niewidoczną niepełnosprawność jaką jest również stomia. Statutowo zajmujemy się szerzeniem wiedzy na temat stomii. Edukujemy, odkłamujemy stereotypy, odpowiadamy na wszelkie pytania. Szkolimy, rozmawiamy i pokazujemy na przykładach, że stomia nie odczłowiecza, że to poważny zabieg, który ratuje życie choć jednocześnie bardzo je zmienia.
Fundacja „Gwiazda Nadziei” z siedzibą w Katowicach jest organizacją pożytku publicznego. Istnieje od 2007 r. Celem Fundacji jest ratowanie ludzkiego życia, w szczególności osób z chorobami wątroby. Stąd Fundacja podejmuje liczne działania, mające na celu wspieranie osób chorych, w szczególności dotkniętych chorobami wątroby, chorobami nowotworowymi i niepełnosprawnością.
Wszystkie działania Fundacji są nieodpłatne dla beneficjentów, którymi są nie tylko osoby chore ale również odbiorcy kampanii społecznych czy programów edukacyjnych, kierowanych do lekarzy, nauczycieli i młodzieży z zakresu profilaktyki chorób wątroby oraz chorób nowotworowych. top
Association of Healthy Polish Cities
- inspiring and supporting local health-promoting actions,
- facilitating the exchange of experiences between member cities and promoting good practices in the field of cross-sectoral health-supporting actions,
- facilitating access to the World Health Organisation's public health materials
- rozpowszechnianych w ramach współpracy Zdrowych Miat w Europie,
- cooperation with institutions and organisations handling health issues.
Zdrowie Człowiek Profilaktyka
Projekt Zdrowie Człowiek Profilaktyka od 10-ciu lat dostarcza gotowe rozwiązania dla samorządów, instytucji i pracodawców w obszarze zdrowia. Zachęcamy do zajrzenia na stronę www.ZdrowieCzlowiekProfilaktyka.pl i skorzystania z bezpłatnych narzędzi ułatwiających zaplanowanie, wdrożenie i ewaluację inicjatyw zdrowotnych. top
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