Abrale – The Brazilian Lymphoma and Leukemia Association
100% effort where there is 1% chance.
Our mission is “Offer help and mobilize partners so that all people with blood cancer in Brazil have access to the best treatment.”
Abrale ( The Brazilian Lymphoma and Leukemia Association) is a nationwide non-profit organization, created in 2002 by patients and family members with the mission of offering help and mobilizing partners so that all people with cancer and blood diseases have access to the best treatment.
Infrastructure:
Abrale is headquartered in São Paulo, with over 60 employees working in different areas: Patient Support; Marketing, Creation and Communication; Information Technology; Distance Learning; Research; NGO Training; Social Investment; Events; Volunteering; Human Resources; Managing and Finances.
Beyond the headquarters, we have an average of 13 external representatives distributed throughout the following cities: Belo Horizonte, Brasília, Campinas, Curitiba, Florianópolis, Fortaleza, Goiânia, Juiz de Fora, Recife, Ribeirão Preto, Rio de Janeiro, Salvador e São Paulo. Additionally, we count on around 200 active volunteers who help us carry out actions on behalf of health and well-being.
Up until 2021, Abrale has served around 50,000 patients.
ABRALE PILLARS
Patient support
The department is made up of internal professionals and external representatives. Both teams are specialized to assist patients with cancers and blood diseases, residing in all Brazilian states.
The internal staff provides, via digital channels and over the phone, all kinds of free help that patients need, pre- and post-treatment. Among the services offered are: psychological care, not only for patients, but also for their families or caregivers to help them cope with cancer and all the feelings that this situation can bring; legal guidance, which reinforces the importance of the patient’s rights before the law; nutritional support, with nutrition professionals who help to improve nutrition during treatment; information about diseases, therapies and prognoses; second medical opinion program, and the Telemedicine Project offering consultation with specialists in onco-hemato, pediatrics and nutrition aimed at patients lacking financial resources or in need of guidance.
The goal of the entire team is to achieve greater adherence to treatment and search for complete remission of the patients treated.
In 2021, the Patient Support team assisted 2,505 patients through digital channels, in addition to providing online psychological care to 634 patients and free legal advice (online) to over 2011 patients.
The external team is made up of representatives who work in 13 cities in 11 Brazilian states, where the main cancer treatment centers are located. The job of these representatives is to identify patients who are hospitalized or undergoing treatment, introduce them to the free services that Abrale offers, register them in the database and create a relationship that benefits them throughout the treatment period, not just through free services, but also campaigns on diseases that occur monthly, the printed Abrale Magazine—delivered free of charge to their homes— and actions such as the Well-Being Project (Projeto Bem-Estar), which offers patients workshops and workshops with professionals from different healthcare areas. In 2021, representatives paid 412 visits to new patients.
Public Policy and Advocacy
Public Policies are sets of programs, actions and activities developed by the State directly or indirectly, with the participation of public or private entities, which aim to ensure a certain right of citizenship, in a diffuse way or for a certain social, cultural, ethnic or economic segment.
Abrale has a Public Policy and Advocacy team focused on relationships and actions that bring improvements and transparency in laws and government processes, to benefit patients with cancer and blood diseases.
We work intensively, together with health agencies, to improve the awareness, humanization and access to cancer treatment. Our purpose is to improve the outcome of treatments in Brazil. Abrale is an active member and is the vice-coordinator of the Intersectoral Commission on Health Care for People with Pathologies – CIASPP.; also coordinates the Intersectoral Committee on Supplementary Health – CISS; and is a surrogate in the Radiotherapy Working Group – CONSINCA.
We visit the main cancer treatment centers in the country (CACON and UNACON) in order to detect the real needs of the units. Based on the demands found, we collect information and start strategic planning, which has partners, companies or public bodies, who can contribute to the improvement of assistance. Likewise, the demands and barriers reported by patients and doctors, who relate to our entity, support our agenda in this department. The aim of all the work is to build bridges between those who need help and those who can help.
VOICES PROJECT – THE PATIENT’S VOICE IN HEALTH
The Voices Project’s main objective is to expand and qualify the participation of oncology actors in the deliberations of government bodies and agencies. The project brings together patients, family members, caregivers, health professionals and leaders in the public and private health area, to together define priorities and be able to humanize and expand care, minimize the bureaucracy faced by people with cancer treated in Brazil and improve the outcomes of the treatments offered, based on the National Cancer Prevention and Control Policy (PNPCC).
The actions are carried out by the Department of Public Policies and Advocacy of Abrale and All Against Cancer (TJCC) Movement, together with the government, with decision makers in Brazil, such as the Mixed Parliamentary Front for the Fight Against Cancer, Ministry of Health, State Secretariats of Health, the National Agency of Supplementary Health, among other government bodies and regulatory agencies.
IN MOVEMENT | MOVEMENT ALL AGAINST CANCER
Our public policy department is one of the branches that join forces in the All Against Cancer (TJCC) Movement. This is an initiative orchestrated by Abrale, which emerged in 2014 to unite hospitals, health authorities and patient associations working to develop collaborative actions to improve and comply with the National Cancer Prevention and Control Policy (PNPCC).
There are 9 active groups, which involve more than 200 institutions from all over the country, with periodic meetings that contemplate the eight PNPCC guidelines, committed to improving cancer care in Brazil.
Annually, ever since 2014, all participants of the All Against Cancer (TJCC) Movement meet in one of the largest Oncology Congresses in the country. At the event, the main advances in the segment are reviewed and topics that require special attention are discussed, with the presence of leaders in the area, including managers of public bodies.
Education and Information
“Our vision is to be an institute of global and sustainable reference in education and research, for the cure of people with blood cancer.”
Through different channels (magazine, social media, website, manuals, podcasts, events, video lessons), we carry out our own productions, which speak not only to patients, but to citizens in general.
Marketing campaigns, carried out throughout the year, keep patients and families informed on blood disorders and their treatments. Awareness campaigns, on the other hand, seek to alert the entire population about the importance of early diagnosis. Due to the pandemic, Abrale campaigns are mostly carried out online since 2020 . Abrale’s social media gained great visibility, impacting thousands of people through Instagram, Facebook, Youtube, in addition to podcasts that are available on the main platforms.
In 2020 alone, over 2.2 million people were impacted by Abrale TV, which features a complete program of educational and informative videos. The videos on Abrale TV have an average duration of 5 minutes, in the format of an interview conducted by a patient with doctors and specialists in the multidisciplinary area.
Abrale Magazine, with quarterly print editions, has approximately 40,000 printed copies per year, which are sent by mail. Its editions bring news about types of treatment, importance of early diagnosis and quality of life, stories of overcoming and patient rights. All articles are written in easy-to-understand language and are supported by the country’s leading experts.
The Online Abrale Magazine, in turn, has a very diversified agenda and an average of two articles per week. The online version has an annual audience of over 5.5 million readers.
Abrale’s website was expanded, redesigned and updated and since August 2020, it has received over 3 million page views, done by people looking for reliable information about blood diseases, cancers and their treatments. Abrale’s website has complete content about cancers and blood diseases, in addition to being a direct channel of communication with patients and a means of promoting the projects carried out by the association.
Distance Learning | ONCOENSINO
Abrale created Onco Ensino in 2016, a distance learning platform, with qualification courses for doctors and public health professionals across the country.
The courses are taught by leading experts in the topics covered, have a very high quality of production and a workload of 4 to 24 hours. The contents are mostly supported by tutoring and, at the end, the successful students receive a certificate endorsed by the Instituto Israelita de Ensino e Pesquisa Albert Einstein (Einstein’s Teaching and Research Institute).
The recruitment of students is primarily done through the partnership/agreement established by Abrale with approximately 268 institutions throughout Brazil. Partnerships include Health Departments, High Complexity Oncology Centers(Cacons) and High Complexity Oncology Units (Unacons), hospitals, clinics and associations that serve cancer patients in Brazil, and professional institutions.
We understand that better-trained doctors and multidisciplinary teams can speed up the diagnosis and apply a more appropriate treatment to the patient. This guarantees improvements in treatment outcomes in Brazil. During 2021, Onco Ensino trained over 30,000 professionals.
Share to multiply! | ALIANZA LATINA
Abrale is committed to sharing all its experience and management model, and to being one of the best developed and recognized associations in the country. Therefore, in 2006, it structured the Alianza Latina Network.
Made up of over 120 member associations operating in 21 countries (18 of them in Latin America), the United States, Portugal and Spain, the Alianza Latina Network’s mission is to promote training, professionalization and cooperation between patient support organizations to continuously improve the quality of life of patients with chronic non-communicable diseases in Latin America.
Until 2021
- 121 member associations in 18 Latin American countries, and USA, Spain and Portugal
- 12 M patients rechead with more than 100 pathologies represented
- 13 associations with financial support of US 10,000.00 each, in six years
Bringing together patient support leaders and promoting the sharing of best practices among social health entrepreneurs provides its members with a space for debate and learning, with similar ideals and missions, so that they can dialogue and together change the health scenario on the continent.
Data Monitoring and Research
The Data Monitoring and Research department works on two fronts:
Open Data Monitoring and Analysis
The Oncology Observatory is a portal that operates as an online and dynamic platform for monitoring open data and sharing relevant information in the field of Oncology in Brazil.
With a descriptive methodology, the studies by the Oncology Observatory seek to determine the distribution of the disease and health-related conditions. All studies use open government data (DGA). The main databases used are from the Ministry of Health (DataSUS), the National Cancer Institute (INCA) and the Brazilian Institute of Geography and Statistics (IBGE). The data cover four dimensions: demographic, epidemiological, health care procedures and structure of the care network. The production of information is based on outpatient visits, hospital admissions, cancer incidence and mortality.
Patient Journey Surveys
Via a phone call, or online, we talk to patients in order to understand their entire journey before, during and after treatment, to verify the inherent needs of the treatment and the difficulties of access. This is information reported by the patient (Real World Evidence).
Both fronts have presented important information about the Oncology scenario in Brazil, contributing to a better understanding and, consequently, decision making.
ABRALE
ABRALE – Brazilian Lymphoma and Leukemia Association – was founded in 2002 with the mission of offering help and mobilizing partners so that all people with blood cancer in Brazil have access to the best treatment.
IMPORTANT
The contents available on this portal are exclusively educational and informative. Under no circumstances should it replace medical advice, examinations and/or treatment. If in doubt, consult your doctor! Access to information is everyone’s right.
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