hard-to-reach abc/mbc communities toolkit

hard-to-reach abc/mbc communities toolkit

To address the critical unmet need in access to care for hard-to-reach populations with advanced/metastatic breast cancer (ABC/MBC), the ABC Global Alliance and Pfizer have collaborated to develop a toolkit of relevant, community-based initiatives and best practice summary documents that aims to drive collaboration across the global ABC/MBC community.

Following the successful launch of the toolkit in 2020 and the addition of 15 initiatives in 2021, an additional 23 initiatives have now been added to further address the unmet need for these hard-to-reach populations.
Educating HCPs
Educating Patients
Support for Patients
Peer-to-Peer Support
Raising Awareness

INITIATIVE REPOSITORY

The Initiative Repository contains information on all initiatives included in the toolkit. It also includes the contact details of initiative owners, and allows users to filter using different criteria to find those that are most relevant. One-page summaries of each initiative can be accessed directly from the updated repository. Click the icon to the right to access the latest repository and consider contacting initiative owners for more information.
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Initiative Repository
Initiatives are grouped into five categories, with each containing one-page summaries of every initiative included in the category, as well as a best practice document that incorporates learnings from all the initiatives in the category. The best practices outlined in these documents have been collated through a combination of written submissions and interviews with the creators of these initiatives.

In 2023, 21 new projects were added to this initiative.

EDUCATING HCPs

Best Practice in Educating HCPs about ABC/mBC
Dandelion Toolkit logo

Dandelion Toolkit

For people newly-diagnosed with ABC/mBC, concepts discussed with HCPs can be complex and difficult to understand. The Dandelion Toolkit aims to improve communication between patients and HCPs through visuals to help guide discussions on diagnosis, pathology, staging, treatment options, and QoL tools.
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mHm logo

Consultation in pictures

In some care centres in France, up to 20% of patients do not speak French well. This tool recaps the different steps of the BC patient journey in pictures, for use in consultations to help HCPs explain to their patients what their disease is, what treatment they will have and what support is available.
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Cancer Avanzado de Mama logo

Reframing advanced breast cancer

There is a lack of evidence-based, accessible information on breast cancer in Spanish to educate patients and support them in shared decision-making about their cancer treatment. This initiative aims to help patients in Venezuela become more knowledgeable, confident and proactive in their care through a social media campaign and a web-based educational tool.
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ORCI

Unmet Need and Living With and Beyond Cancer in Africa

In Ghana and Tanzania there are a lack of support services for people living with and beyond BC. This initiative was developed to assess the unmet needs of women following primary BC treatment, and determine the feasibility of implementing a recovery package (holistic needs assessment, care plan and treatment summary) for these patients.
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Demonstration of a Scalable Breast Health Care Pathway: Experience from Botswana

Demonstration of a Scalable Breast Health Care Pathway: Experience from Botswana

It is estimated that 70% of BC cases are diagnosed late in Botswana and there are often delays to diagnosis and treatment. This initiative provides education on breast awareness and examination, as well as improving the patient journey from community to treatment by identifying delays, reducing the time at each stage, and improving quality of services.
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Foundations of Cancer Care

Foundations of Cancer Care

Opportunities for cancer nursing education in Africa are limited and in Ghana and Tanzania there is a lack of specialist cancer care and knowledge among nurses. This one-year initiative aimed to identify current levels of competence and then develop a culturally sensitive training programme for nurses in practice and peer support advocates delivering cancer care.
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Factors Influencing Treatment Decision Making in West African Women Diagnosed with BC Living in London

Factors Influencing Treatment Decision Making in West African Women Diagnosed with BC Living in London

Young black women in the UK have significantly poorer BC outcomes compared with average and there is a lack of understanding of the factors influencing decision making in West African women living in the UK. This ethnographic study was conducted to enable HCPs to better understand these women’s beliefs & behaviours and adjust their own approach accordingly.
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The University of Nigeria Teaching Hospital logo

Patient Navigation Program

Low numbers of oncologists in Nigeria means that consultations are often rushed and patients are left not fully understanding their diagnosis and treatment options, and with emotional and psychological challenges. This initiative established a patient navigation protocol for HCPs and a unit in the UNTH oncology centre providing support and education for cancer patients.
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TOP: Treatment Optimisation Program in Breast Cancer

TOP: Treatment Optimization Program in Breast Cancer

In Egypt, HCP and patient understanding of breast cancer is generally low. This initiative aims to improve public and patient understanding of the disease, as well as improving oncologist capabilities, through monthly MDT meetings and a series of online courses, enabling more breast cancer patients to receive appropriate treatment (per ESMO/ASCO guidelines).
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Pfizer and Mi Salud me Mueve logos

Guiding Questions for Cancer Patients

Many people with cancer in Colombia have low health literacy and interactions with medical professionals can be challenging. This practical guide provides questions for people with cancer to ask their healthcare professionals throughout the patient journey. It is hosted on the Salud Me Mueve website and was disseminated via a social media campaign.
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Pfizer and Academy of Oncology Nurse & Patient Navigators (AONN+) logos

Geriatric cancer care toolkit

Over 50% of cancer survivors in the US are over 65 years, and this group of patients face more challenges and barriers to optimal cancer care than younger patients. This initiative provides an educational toolkit for nurses and patient navigators to help them better support this patient population and help minimize barriers to care.
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Path and Instituto Nacional de Enfermedades Neoplasicas logos

Training caregivers in oncological palliative care

In Peru, many patients, families and caregivers lack awareness of how to manage pain, symptoms and treatment side effects of cancer through home and self-care practices. The “School for Caregivers” curriculum was developed to train HCPs in educating families and caregivers in home-based pain and symptom management and palliative care.
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Educating Patients

Best Practice in Educating Patients about ABC/mBC
hilfe fur mich

Help For Me - Patient Navigator

In Germany, patients often lack the ability to navigate the complex healthcare system. This initiative supports patients with ABC/MBC and caregivers in navigating through the healthcare system thanks to a co-created, digital support solution which aims to ensure equity and access to health services. The website has since been expanded to include 9 other indications.
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Metastatic Care: Educational Component

Following the roll out of previous MILC initiatives, it was identified that many specific needs of patients with ABC/MBC were not being met. This standardised psychoeducational intervention was developed to assess and improve patient understanding of their disease, allowing them to actively participate in decision-making processes and ultimately improve quality of life (QoL).
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Spanish-language BC Patient Education Novelas

Spanish-language BC Patient Education Novelas

The lack of available material in Spanish-language on ABC/MBC is a barrier to access for LatinX patients, making discussions with HCPs complex. An original graphic novel was developed on the diagnostic journey of an MBC patient. Following this novela’s success this initiative is creating a sequel focused on the importance of genetic testing and hereditary cancer.
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Uncovered: a breast recognition project

Black, Indigenous and People of Colour (BI&POC) are underrepresented and lack adequate support in the Canadian healthcare system. Uncovered uses imagery and authentic storytelling to draw attention to the impact of breast cancer, cultural barriers and health inequity on these underserved communities in Canada.
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Talking to kids about metastatic breast cancer

Communicating with family and young children about an mBC diagnosis, treatment and end of life can be very challenging, and adds to the burden of navigating the disease. This project developed an educational resource to support young mothers in having these conversations with their children in an open and honest way.
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LGBTQ+ diversity in clinical trials

LGBTQIA+ communities and gender minorities are underrepresented in cancer clinical trials and often face barriers such as mistrust and lack of information about access to trials. This initiative provides accessible resources for these populations on access to clinical trials and on how to request information about clinical trials from health care providers.
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ABC Project

ABC Project

While there are many BC support groups in Japan, most are not for people with ABC/MBC and many people with advanced disease have difficulties finding information online. The ABC Project aims to educate and empower people with ABC/MBC, their families, and HCPs, through online seminars, e-learnings, and episodes.
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mBC dictionary

mBC dictionary

The dictionary aims to improve communication between HCPs and newly diagnosed patients and their loved ones. The objective of the dictionary is to explain and provide greater context to the unfamiliar key terms and phrases that are commonly used when talking about ABC/MBC diagnosis, treatments and the experience of living with MBC.
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You Have a Choice Campaign

In Poland, there is low awareness of ABC/mBC and the treatment options available. The “You Have a Choice” nationwide educational/social campaign aims to raise awareness of the benefits of CDK4/6 inhibitors and the importance of patient involvement in treatment decisions, through expert meetings, roundtables, a call to action/manifesto, and online patient training.
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Digitally EmpoweredTM

DIGITALLY EMPOWEREDTM

It can be difficult for newly diagnosed cancer patients to navigate the wealth of information online. Digitally EmpoweredTM is an online course aiming to provide patients with knowledge and tools to find credible information about their disease, empowering them to make informed decisions about their treatment, through a series of easy-to-follow video modules.
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How to improve the informed consent (IC) process and understanding using 3D film or cartoon material

Informed consent (IC) forms for clinical trials are often long, complex and technical in nature, which can be a barrier to patient enrolment, particularly for poorly educated and older patients. This initiative seeks to improve understanding of the IC process through 3D film or cartoon material, in order to improve access to trials for all patients.
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Breast cancer school for patients

Kazakhstan has a high incidence of breast cancer and significantly lower 5-year survival rates compared to OECD countries. The leading oncology center in the Abay region sees a high number of patients, who often have low health literacy. This initiative provides a series of patient training and education sessions on all aspects of BC to improve treatment outcomes.
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Frankly speaking about cancer: triple-negative breast cancer in black and african american communities

Black and African American persons have a higher risk of developing breast cancer at an early age, a higher risk of cancer recurrence, and a higher risk of death from breast cancer than White persons. This initiative provides information on breast cancer and health inequalities to empower and educate Black and African American populations in the US, Canada and Israel.
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I know! I can!

The incidence of breast cancer is increasing in Kazakhstan, but many breast cancer patients have a poor understanding of the disease, treatment and risk factors for relapse. This initiative aims to support and educate patients in Astana in Kazakhstan about the disease, diagnostic tests and treatment, and healthy living for better disease control.
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Metastatic breast cancer: everything you need to know

Many mBC patients and their caregivers lack knowledge about mBC and the available treatments and support that can improve their quality of life. This project aims to educate patients and the general public in Mexico through a website providing information in Spanish about mBC and its treatments.
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One in eight women

There is a lack of patient-friendly breast cancer educational resources and support for accessing healthcare available in Spanish in the US. This multi-faceted initiative provides outreach events in underserved Hispanic communities, breast cancer information materials in Spanish, and direct support for accessing healthcare resources by Spanish-speaking patient advocates.
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Support for patients

Best practice in Support for Patients with ABC/MBC
Mobile App: My Alma Hellenic Association of Women with Breast Cancer "ALMA ZOIS"

Mobile App: My Alma

In Greece there is a lack of support specifically tailored to the needs of patients with ABC/MBC, meaning patients often feel isolated and ashamed. The My Alma app was developed to support patients with ABC/MBC in an easily accessible, friendly, hopeful and realistic manner, bridging the gap between support services and these patients and ultimately improving QoL.
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Let the Hopes Blossom

Despite evidence suggesting QoL is a crucial factor impacting prognosis, in Turkey there is a lack of psychosocial support for patients with ABC/MBC. This multi-organisation collaborative initiative was developed to provide psychological support for patients with ABC/MBC, as well as raising awareness about the importance of psychological support for these patients.
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HOPE Retreat

Hope retreat

In the US, many single mothers with MBC are below the federal poverty level. This initiative provides financial and emotional support to these women and their children through a series of one-day retreats, including speaking with licensed social workers and therapists, art therapy, breakfast & lunch, and a grocery card to take away.
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Breast cancer navigation & palliative program (BCNPP)

In Nigeria, there is stigma and misunderstanding associated with breast cancer, and many patients do not receive adequate support. The BCNPP is a cancer care programme designed to educate cancer survivors and caregivers across Nigeria to become professional patient navigators who can guide women with ABC/MBC.
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Serene woman

Many women with a breast cancer diagnosis suffer from a fear of cancer recurrence and progression. This initiative provides a free training program in strategies for dealing with fear and anxiety for women of low socio-economic status who are within 5 years of a breast cancer diagnosis in Mexico, Peru and Ecuador.
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Palliative Care and Home Visit for Rural Cameroonian Patients with ABC

In rural areas of Cameroon, 90% of patients with ABC/MBC live without treatment and breast cancer is often discovered at a very advanced stage due to lack of awareness. This initiative organises home visits and psychosocial support for patients with ABC/MBC, as well as training for traditional healers, HCPs and members of the community in breast health.
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Support for Those Living with Incurable BC

Support for those living with incurable BC

There is a lack of support for patients with ABC/MBC in New Zealand and life expectancy is low for these patients. This initiative offers a holistic programme of social, psychological, emotional, practical, and financial support to enable patients with ABC/MBC to live as well and as long as possible.
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Reusable wound kits for malignant fungating breast wounds (MFBW)

Women with malignant fungating breast wounds (MFBW) experience limited healthcare support in Timor Leste. This initiative saw a team of Australian volunteer nurses travel to Timor Leste to provide patients with reusable wound care kits, as well as educational support to allow women to self-manage MFBW, maintaining their dignity and subsequently improving QoL.
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My Choice Navi

My Choice Navi

Patients with ABC/MBC in Japan are often poorly educated on their disease and lack support throughout their treatment. The MY CHOICE Navi account was developed on the Japanese social networking app, LINE, to provide patients with easy access to relevant information on ABC/MBC, as well as supporting treatment continuation via a hospital visit tracker.
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SATORI (II) - Self care and wellness for patients

The SATORI (II) initiative is a holistic wellness programme for women who have undergone breast cancer recurrence. The programme provides the training and tools necessary to allow patients to care for themselves in their own home, which otherwise could not be done due to a lack of affordable and accessible services.
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Winter Mission

Winter mission

Women living in isolated and remote Greek islands encounter social and economic barriers that prevent them assessing breast cancer prevention services. This initiative brings these services to the remote locations, as well as offering medical services and informative lectures specifically for patients living with ABC/MBC.
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Meeting Patients Needs to Improve Physical Self-image and Psychological Wellbeing

Meeting patients needs to improve physical self-image and psychological wellbeing

Patients receiving treatment for BC in Albania lack access to resources such as silicone prostheses and wigs, which negatively impacts the QoL of these patients. This initiative aims to improve the self-image and psychological wellbeing of patients with BC through the provision of both wigs and silicone prosthesis.
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Grant assistance program for single mothers with ABC/mBC

Infinite Strength is a non-profit organisation with a mission to provide financial support to underserved single mothers with ABC/mBC in the US. This initiative provides eligible applicants with financial support of $6,000 for rent, mortgage, utilities and food, as well as free admission to the organisation’s HOPE retreats and quarterly Life Support Series panel discussions.
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Life coaching: navigating life with uncertainty

There is a lack of emotional and psychological support for young adults living with cancer, including mBC, to handle the impact of their cancer treatment on their quality of life. This initiative offers a 6-week online coaching programme to equip young adults with knowledge and tools to improve their mental well-being and to create a supportive peer community.
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Palliative care services

Low-income cancer patients often lack access to adequate palliative care services. The PAY-W (‘Pay As You Wish’) Clinic offers free or affordable palliative care services directly and through their not-for-profit partners to poor cancer patients, primarily from indigenous communities in LMIC and countries affected by civil war.
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Patient navigation and companionship

Many women with advanced cancer face financial or other barriers to accessing high-quality cancer care. This initiative provides various forms of support including patient navigation, education, transport to appointments, and social support to patients with all advanced cancers, including mBC.
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Renew

There is a lack of awareness of the benefits of physical activity for cancer patients and a lack of targeted support for young people diagnosed with cancer. The RENEW programme is an 8-week physical activity online programme that aims to create a supportive community of young adults living with cancer, including mBC, who can get active together.
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305 Pink pack cancer support services

Low-income and vulnerable communities face many barriers to accessing cancer and recovery care. This program, serving a largely Hispanic population in South Florida, provides a range of services aimed at reducing these barriers and improving equity in care and recovery, including childcare, transportation, self-care services and emotional support.
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Peer-to-Peer Support

Best practice in Peer-to-Peer Support Groups or Platforms for Patients with ABC/MBC
The HOPE (Helping Others through Personal Experience) Project

The HOPE (Helping Others through Personal Experience) Project

In Ghana there is a lack of counselling available for patients with ABC/MBC and patients are often led to believe that it is not possible to maintain QoL while living with ABC/MBC. This initiative trains patients to become peer-to-peer counsellors, to help demystify BC and provide advice to patients with newly diagnosed BC or ABC/MBC.
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Discussion groups for people with ABC/mBC

Discussion groups for people with ABC/mBC

Patients with ABC/MBC in the Netherlands have limited access to psychological support and there is a lack of willingness to mix with patients with BC. This initiative organises accessible, monthly discussion groups specifically for patients with ABC/MBC, led by trained cancer coaches, allowing patients to connect, learn from each other and ultimately improve their QoL.
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Through My Eyes Facebook Page

Through My Eyes Facebook Page

While there is a lot of information on breast cancer in Asia, there is a lack of specific information and support for patients with ABC/MBC. This Facebook page provides a community specifically for patients with ABC/MBC, including reliable, specific information on their disease, sharing of patient stories, and links to patient organisations with relevant content.
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Patient Empowerment Workshop – We are ConnectedThe Lebanese Breast Cancer Foundation

Patient Empowerment Workshop – We are Connected

In Lebanon, support for women with ABC/mBC is unequal to that for with patients with eBC. This annual workshop was created to integrate ABC/mBC into awareness efforts for BC, and to connect, empower and inspire patients with ABC/mBC through educational sessions from specialists in nutrition, sexology, psychology, oncology, meditation and beauty.
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Malaika (Angel Program)

Malaika (Angel Program)

In Uganda there is limited psychosocial support for patients with ABC/MBC and patients often struggle financially and with nutrition. This initiative trains patients with ABC/MBC and their families on ways of improving their nutrition and income, as well as providing access to psychosocial support services and community palliative care.
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Europadonna-Meme

Europa Donna Breast Health

Patients with ABC/MBC in Turkey lack access to validated medical content and social interaction with other patients. Following the success of the Let Hopes Blossom Initiative, Europa Donna and Pfizer Turkey collaborated again to create this Instagram page for patients with ABC/MBC, offering both medical content and opportunity to engage with other patients.
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Abuja Breast Cancer-Support Group (ABC-SG)

Abuja Breast Cancer-Support Group (ABC-SG)

In Nigeria, there is stigma and misunderstanding associated with breast cancer, and many patients do not receive adequate support. This initiative connects people impacted by breast cancer in Nigeria to support, educate and empower them, through patient navigators, telephone support, monthly support groups, financial support, and educational materials.
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Navigating menopause

There is a lack of awareness of and support for young patients living with cancer, including mBC, who undergo menopause as a result of their cancer treatment. This initiative provides a 6-week online support programme that aims to create a supportive community of peers and give patients the knowledge and tools to tackle menopause and improve their quality of life.
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Raising Awareness

Best practice in Raising Awareness & Promoting Earlier Diagnosis
ABC INFOGRAPHICS

ABC INFOGRAPHICS

Following breast cancer diagnosis, many patients are unaware of advanced/metastatic disease and the symptoms to look out for. This initiative comprises two infographics showing simple-to-understand, red-flag symptoms for both ductal and lobular ABC/MBC, and is intended for use with patients and as an educational tool for HCP training.
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Givemetime.now

Givemetime.now

This multi-channel awareness campaign has been created to highlight the unequal uptake of CDK4/6 inhibitors across Sweden despite there being a national recommendation to use them within their label. The campaign comprises of a film and web-page which will be promoted, via digital and traditional channels, to help increase the uptake of CDK4/6 inhibitors.
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Care-A-Van Breast Cancer Project

Care-A-Van Breast Cancer Project

In Malaysia, there are multiple barriers to early diagnosis and treatment of BC, and outreach projects often work in silos and are restricted to big cities. This collaborative, multi-organisation initiative aims to increase early BC diagnosis in urban poor communities, as well as provide information, support and care specifically for patients with ABC/mBC.
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The “Cima Model”, Understanding, Training and Acting: An Experiential Practice Towards Early Cancer Detection

The “Cima Model”, Understanding, Training and Acting: An Experiential Practice Towards Early Cancer Detection

People living in marginalised areas of Mexico are often diagnosed with late-stage breast cancer due to limited information on the risks of BC and early detection methods. This initiative aims to train a network of health promoters to raise awareness of BC and lower the number of diagnoses at advanced/metastatic stage, as well as improving QoL for those diagnosed.
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Community Outreach Programme

Community Outreach Programme

Women in Ghana, especially those in villages and deprived communities, have low awareness of BC and often do not have easy access to early detection methods. This initiative aims to reduce the rate of late-stage BC diagnosis by travelling to these communities to offer education, breast examination, advice and support (including for patients with ABC/MBC).
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Community-Based Women's Cancer Awareness

Community-Based Women's Cancer Awareness

Communities in Haiti have low awareness of BC and often do not engage with cancer care services until the disease is at a very advanced stage. This research-led initiative aims to raise BC awareness through a multimedia campaign, designed in Creole, including pamphlets, videos, t-shirts, and wallets for the public and a training manual for HCPs.
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Male Breast Cancer Global Alliance

Globally, there is low awareness and stigma around male BC and male mortality rates are rising steadily. This organisation advocates to change the BC conversation and provide men with the same access to research, clinical trials and drugs as their female counterparts. As part of their work they have developed breast self exam cards specifically for males.
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Treat Me Well

Patients with BC in Brazil often face delays in diagnosis and starting treatment, and are unaware of their rights to care. The annual awareness campaign during ‘Pink October’ has been created by FEMAMA with the aim to change public policy – empowering patients, informing them on their rights, and the possibilities of better access to care in Brazil.
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BC AwarEness Campaign

In Israel, Jewish ultra-orthodox communities do not encourage testing or obtaining medical information despite a high risk for BRCA mutations, and older Arab women have low treatment compliance. This awareness campaign, using culturally-adapted tools, aims to raise awareness of BC, and the importance of BRCA testing and treatment among these communities.
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Breast cancer disease awareness campaign for ethnic minorities in colombia

African-American women have a higher risk of developing aggressive breast cancer but lower access to diagnostic examinations than women of other ethnicities. In collaboration with Vive Afro, a media and digital content company specializing in Afro-Colombian culture and content, Pfizer developed and conducted a campaign in Colombia to raise awareness of breast cancer.
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