The Brazilian Lymphoma and Leukemia Association – ABRALE works across the country to democratize the treatment and quality of life of people with hematologic malignancies to guarantee universality, equity and integral service for all.
Our activity:
Patient Support
We have a multidisciplinary team with: psychologists, who assist the patient in coping with the disease, nutritionists that elaborate personalized diets, lawyers, who give information on the rights guaranteed by law and advocate for policy improvements, nurses and social workers, who clarify doubts about the diseases and a team with committed professionals that work to improve prevention, access to treatment and better outcomes continuously.
Education and Information:
We produce information material, i.e. leaflets, booklets, videos and the Abrale magazine for patients, family members and health professionals. Abrale’s website and social networks are sources of information and contact with all Stakeholders. We also provide access to the best experts at the Abrale Meeting, a biweekly event, with free lectures, and also through Chat Abrale, an online tool to connect patients and caregivers to doctors and health professionals on different issues. We also offer sophisticated on-line educational to health professionals and physicians of the country, contributing with early diagnosis and care improvement.
Research and Data Organization:
We take advantage of technology advancements to improve knowledge about oncology facts in our country.
From patients, we have our own registry and collect real world evidence . Also we use government open data and analyze them and publish in a dynamic and interactive on line plataform. Our data scientist contribute to the understanding of the oncology scenarium.
Public policy and Advocacy:
We work intensively in the area of advocacy to represent our patients before the Government. We partner with social organizations, participate in the National Health Council and events related to the theme. We collaborated to advance important laws, which greatly benefited the health system and Oncology in Brazil. Our strategy includes actions to improve public and private care in oncology , transparent and efficient use of public resources and focus on better clinical outcomes .
Our mission is to actively represent and promote the interests of patients in the exercise of their right to health care, leading to prolonging life and improving its quality.
We listen to patients, find answers to their questions, and help them get the best possible treatment.
We work with top Slovak hematologists and monitor current scientific work on the treatment and research of hematological diseases. All important news about haematological malignancies can be found on our website and in the information materials.
Our helpline supports patients to keep with their treatment regimen. We provide with the information and support them to get the medication right.
We provide patients with legal advice. Our website provides practical advice and guidance on how to address the financial and social difficulties caused by the illness.
We help patients to get the right treatment – on our website and in our information materials, they find detailed information on the different options for treating their disease as well as on whether this treatment is covered by health insurance companies and under what conditions.
We also put together the medical and legal arguments and represent individuals who need treatment that is not covered by their health insurance. We turn to a health insurance company and look for other solutions to mediate the treatment on behalf of patients.
LyLe’s story
We were founded in sept. 2007 by a small group of individuals – all diagnosed with hematological cancer. Today we are a well established and very active advocacy group based on volunteers with own independent board and economy. We are funded by the Ministry of Public Health , by private funds, by members, and pharmaceutical companies. LyLe’s purpose and association’s work is based on the dialogue.
We work on 3 main areas: Dialogue with others, information and impact on systems. Our motto is: You are not alone!
Dialogue with others
LyLe facilitates contact between patients with the same disease, shortly after diagnosis, during the course of treatment or after treatment.
We also promote dialogue between the relatives and with professionals.
Information
We produce information about the disease, via magazines, booklets, and promote their distribution after the consultation, so that patients can keep it.
Through our website we provide updated links to find more information about the diseases.
We are also very active on Facebook, Twitter and on YouTube you can find all kind of informations related to hematological diseases we are working with, lymphoma, leukemia and MDS
Advocacy
We strive to interact with patient and relatives, united we stand! We also strive to have an impact in the health care system, through our political campaigning and our direct dialogue with the health service with the aim of representing patients and their needs.
The Slovenian Association of Patients with Lymphoma and Leukemia, L & L, was founded on May 15, 2007.
OUR OBJECTIVES:
- Informing and raising public awareness of lymphomas, leukemia and other blood diseases,
- The quest for the early detection of lymphomas, leukemia and other blood diseases, and the best diagnostic treatment and treatment of patients,
- The pursuit of comprehensive care for patients during and after treatment,
- Informing and assisting patients and their relatives during treatment,
- Care for patients to understand the proposed methods of treatment and to participate in clinical trials at home and abroad,
- Raising awareness of their rights in the field of health and social care and education,
- Advocating for a correct and human attitude towards the patient by all the participating institutions in the process of healing, rehabilitation and return to the working, social and educational environment,
- Raising awareness of the importance of donation of blood-forming stem cells,
- Promoting the spread of the Slovenian register of blood donor stem cell donors,
- Organization of professional lectures, conferences and congresses for patients and relatives in the field of health and a healthy lifestyle, organization of workshops, sports and cultural events, etc.,
- Promoting a healthy lifestyle
- Developing and organizing self-help and volunteering.
A Associação Portuguesa Contra a Leucemia (APCL) foi fundada em janeiro de 2002 é uma Instituição Particular de Solidariedade Social.
A principal motivação dos Fundadores da APCL radicou na sua compreensão da importância de consciencializar e mobilizar a sociedade civil no apoio a todos os que diariamente lutam contra a devastadora doença que é a Leucemia.
A APCL tem como missão contribuir, a nível nacional, para aumentar a eficácia do tratamento das Leucemias e outras neoplasias hematológicas afins.
Os principais objetivos da Associação Portuguesa Contra a Leucemia são:
- Casa Porto Seguro – casa de acolhimento para doentes e cuidadores em Lisboa;
- APCL Cares – Programa de Apoio Social a doentes com dificuldades financeiras;
- Aumento da literacia em saúde para doentes e cuidadores;
- Grupos de Apoio para doentes e cuidadores;
- Bolsas de Investigação científica.
The Portuguese Association Against Leukemia (APCL) was founded in January 2002. It is a Private Institution of Social Solidarity.
The main motivation of APCL founders was their understanding of the importance of raising awareness and mobilising civil society in support of all those who struggle against Leukemia.
APCL’s mission is to contribute, at national level, to increase the effectiveness of the treatment of Leukemias and other related haematological malignancies.
The main objectives of the Portuguese Association Against Leukemia are:
- Casa Porto Seguro – reception house for patients and caregivers in Lisbon;
- APCL Cares – Social Support Program for patients with financial difficulties;
- Increased health literacy for patients and caregivers;
- Support groups for patients and caregivers;
- Scientific research grants.
The Association of citizens for rare diseases LIFE WITH CHALLENGES is formed and lead by patients and families facing rare diseases. As a patient organization we advocate for patients rights, we provide information on diseases, we translate information, we connect patients and families with other patients and families with the same rare disease, we organize patient gatherings, we organize educative lectures for medical professionals, we have many activities for raising public awareness, we also have capacity building activities, activities for networking and communication with stakeholders and other activities depending on the needs of the patients and families facing rare diseases.
Здружението на граѓани за ретки болести ЖИВОТ СО ПРЕДИЗВИЦИ е формирано и водено од пациенти и семејства кои се соочуваат со ретки болести. Како организација на пациенти се застапуваме за правата на пациентите, понатаму споделуваме информации за болести, едукативни материјали, преведуваме информации на бараање на пациентите, ги спојуваме пациентите и семејствата со други кои се соочуваат со истата болести, организираме собири на пациенти, едукативни предавања за здравствени работиници, имаме многу активности за подигнување на јавната свест, активности за градење на капацитет на организацијата, активности за вмрежување и комуникација и слично зависно од потребите на пациентите и семејствата кои се соочуваат со ретки болести.
The association aims at assisting patients with hematological diseases and developing new research programs and treatment methods.
For this purpose it undertakes the following activities:
- It organizes the treatment of patients suffering from leukemia, lymphoma, MDS and other blood malignancies.
- It collects donations and runs programs to help patients.
- It promotes new treatment methods, and provides professional and financial assistance to these programs.
- It supports programs to help patients and their families.
- It supports research work in the field of etiology, therapy and treatment of haematological malignancies.
- It develops bone marrow transplant programs in the Republic of Croatia.
- It organizes seminars and conferences and distributes information to health and research institutions.
Hrvatska udruga leukemija i limfomi
Udruga ima za cilj pružanje pomoći pacijentima oboljelima od hematoloških bolesti i razvijanje
novih istraživačkih programa te metoda liječenja.
U tu svrhu poduzima sljedeće aktivnosti:
- Organizira liječenje pacijenata oboljelih od leukemije, limfoma, MDS-a i drugih malignih
hematoloških bolesti.
- Prikuplja donacije i vodi programe pomoći pacijentima.
- Promovira nove metode liječenja i pruža stručnu i financijsku pomoć tim programima.
- Podržava programe pomoći pacijentima i njihovim obiteljima.
- Podržava istraživački rad u području etiologije, terapije i liječenja hematoloških malignih
bolesti.
- Razvija programe transplantacije koštane srži u Republici Hrvatskoj.
- Organizira seminare i konferencije te distribuira informacije zdravstvenim i istraživačkim
institucijama.
Wij bieden ondersteuning aan patiënten, de partner en hun omgeving via
– informatieve bijeenkomsten,
– persoonlijk- en telefonisch contact,
– ontmoetings- en ontspanningsactiviteiten,
– een tweejaarlijkse infodag.
We provide support to patients, their partners and their environment through:
– informative meetings,
– personal and telephone contact,
– meeting and relaxation activities,
– a biennial info day.
The Leukaemia Foundation is the only Australian charity helping those with leukaemia, lymphoma, myeloma, MDS and related blood disorders survive and live a better quality of life.
Each day, another 35 Australians are diagnosed. Although improved treatments and care are helping more people survive, sadly someone loses their life to blood cancer every two hours. Blood cancer is the third most common cause of cancer death in Australia, claiming more lives than breast cancer or melanoma.
Helping local families beat blood cancer
Each year, the Leukaemia Foundation helps hundreds of families from regional and rural Australia by providing free accommodation in our capital cities so they can access life-saving treatment at major hospitals. Our transport service also helps thousands get to and from medical appointments, driving more than one million kilometres each year to ensure people get the medicines they need to beat their blood cancer. Thanks to its supporters, the Leukaemia Foundation is also able to provide counselling, comprehensive information, education and support programs and financial assistance to help the 60,000 Australians who are currently living with a blood cancer.
Helping Australian researchers beat blood cancer
Researchers funded by generous supporters of the Leukaemia Foundation are working tirelessly to discover safer and more effective treatments that will save lives and help people lead a better quality
of life. Our $38m cancer research program has been running for more than a decade and finds the causes of blood cancer and improves the way people are diagnosed and then treated. The Leukaemia Foundation gives those impacted by blood cancer a strong voice, advocating for change and ensuring all Australians who need them have easy access to the very best blood cancer treatments.
La Asociación Española de Afectados por Linfoma, Mieloma y Leucemia fue constituida por pacientes el 8 de Octubre de 2002 y es una asociación de ámbito nacional declarada de Utilidad Pública por el Gobierno Español.
Con los años, AEAL ha comenzado a trabajar con pacientes con diagnóstico de diversas patologías oncohematológicas tales como linfoma, leucemia, mieloma, síndromes mielodisplásicos y síndromes mieloproliferativos.
Los objetivos de AEAL son la formación, información y ayuda a pacientes oncohematológicos y sus familiares; prestando asistencia telefónica, apoyo psicológico, asesoramiento jurídico, apoyo social e información para los pacientes en el diagnóstico y los tratamientos sobre sus enfermedades. AEAL está gestionada principalmente por pacientes que desarrollan su actividad en calidad de voluntarios ofreciendo información y apoyo emocional. Siendo estos servicios y actividades gratuitos para los pacientes y sus familiares.
AEAL (Spanish Group of Lymphoma, Myeloma and Leukemia patients and relatives) was constituted by patients on October 8th, 2002 and is a nation-wide association declared of Public Utility by the Government of Spain.
Over the years, AEAL has begun working with patients diagnosed with various pathologies oncohematological such as lymphoma, leukemia, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms.
AEAL goals are training, information and support of oncohematological patients and their relatives providing phone assistance, psychological support, legal advice, social support and information for patients about their diseases, diagnosis and treatments. AEAL is mainly managed by patients who develop their activities as volunteers offering information and emotional support. Services and activities for patients and relatives are free of charge.
This overview is interactive and detailed information is displayed by moving the mouse. Under the country name there is a (pink) reference to the health insurance system (if known) in this country.
