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This is a list of health advocacy and consumer groups in the U.S. and Canada that take no funding from pharmaceutical, medical device, or biotech companies. The voices of independent groups that truly represent patients and consumers are drowned out by the thousands of groups that take money from industry and push industry viewpoints – or stay silent on drug safety, drug costs, and other issues vital to patients. This list is meant to be a resource for media and consumers who want to listen to – and support – independent groups whose opinions are not swayed by industry.
To learn more about pharma-funded advocacy groups, please read some of our articles on how pharma-funded groups negatively affect healthcare. For an in-depth analysis of the effect of industry funding of breast cancer groups, check out Health Advocacy, Inc.
Want to be on the list? If you represent a patient or consumer health advocacy group that does not take money from manufacturers of drugs, medical devices, biologics, or diagnostics, please email us at pharmedout@gmail.com with a link to your organization's website, 3 years worth of 990s (or t1004 or t3020 for Canadian groups) and annual reports, and a statement that the organization does not take money from industry and has a policy not to take money from industry. The groups submitted will be vetted by a committee that includes Sharon Batt PhD, author of Health Advocacy, Inc. and Adriane Fugh-Berman MD, director of PharmedOut.
U.S. Organizations
U.S. Organizations
National Women’s Health Network
The National Women’s Health Network (NWHN) promotes a critical analysis of health issues in order to affect policy and support consumer decision-making; identifies and exposes health care abuses; monitors the actions of Federal regulatory and funding agencies, the health care industry, and the health professions; and mobilizes grassroots action for women’s health.
Email: nwhn@nwhn.org
Phone: (202) 682-2640
National Center for Health Research
The National Center for Health Research (NCHR) is a nonprofit, nonpartisan think tank focused on research that can improve the health of adults and children. We do not accept funding from companies that make medical treatments, and that means we are a voice you can trust, providing information you can use for prevention, treatment, and policy.
Email: info@center4research.org
Phone: 202-223-4000
Breast Cancer Action’s mission is to achieve health justice for all women at risk of and living with breast cancer. At BCAction, we focus on systemic interventions that will address the root causes of the disease and produce broad public health benefits.
Email: info@bcaction.org
Phone: (415) 243-9301
Public Citizen Health Research Group
Public Citizen’s Health Research Group promotes research-based, system-wide changes in health-care policy and drug safety. They work to have unsafe or ineffective drugs and medical devices banned or re-labeled, to reduce worker exposures to hazardous chemicals and generally to curb industry’s influence over regulators.
Email: hrg1@citizen.org
Phone: (202) 588-1000
Our Bodies Ourselves (OBOS) is a nonprofit, public interest organization that develops and promotes evidence-based information on girls’ and women’s reproductive health and sexuality. OBOS’s publications, website, and blog also address the social, economic and political conditions that affect health care access and quality of care.
Email: office@ourbodiesourselves.org
Phone: (617) 245-0200
Center for Science in the Public Interest
The Center for Science in the Public Interest is a consumer advocacy organization whose twin missions are to conduct innovative research and advocacy programs in health and nutrition, and to provide consumers with current, useful information about their health and well-being. Our goals include representing the citizen's interests before regulatory, judicial and legislative bodies on food, alcohol, health, the environment, and other issues.
Phone: (202) 332-9110
Jacobs Institute for Women’s Health
The Jacobs Institute of Women’s Health works to improve women’s health through research, dialogue, teaching, and information dissemination. The Jacobs Institute promotes environments where an interdisciplinary audience – including healthcare professionals, researchers, policymakers, and advocates – comes together to discuss ways to advance women’s health.
Email: WHIeditor@gwu.edu
Phone: (202) 994-0034
Lymphoma Foundation of America
Lymphoma Foundation of America is a national charity devoted to helping lymphoma patients recover from cancer. All of our programs and services are free. We provide nurse-counseling, referrals to specialists, patient support services, help with second opinions, travel assistance, co-sponsor teleworkshops with lymphoma experts, and patient information via our website: www.lymphomahelp.org. We are committed to finding a cure for lymphoma through scientific research. Our priorities are: helping patients and families, supporting research to develop new treatments, identifying the environmental causes of lymphoma, and prevention of this disease.
Email: LFA@lymphomahelp.org
Phone: (734) 222-1100
Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs. Patients For Affordable Drugs collects patient stories and amplifies the voices of patients to make policymakers understand the heavy toll of high priced drugs; educates, activates and mobilizes patients in support of policy changes at the federal and state levels that can lower the prices of prescription drugs; works on the fundamental notion that we can have innovation and new drugs at reasonable prices.
MedShadow Foundation uses its website and various social media platforms to gather and post timely articles and news about medical conditions, side effects and alternative therapies.
The Right Care Alliance (RCA) is a grassroots coalition of clinicians, patients, and community members organizing to make health care institutions accountable to their communities and put patients, not profits, at the heart of health care.
Email: info@rightcarealiance.org
Lown Institute seeks to catalyze a grassroots movement for transforming health care systems and improving the health of communities. This movement’s goal: to advocate for a transformation of the health care system and for a redirection of resources currently being wasted in health care towards promoting community health and redressing health disparities.
Email: info@lowninstitute.org
Phone: (617) 992-9322
The Breast Cancer Consortium (BCC) is an international nonprofit that analyzes the social, cultural, and system-wide factors affecting breast cancer. BCC promotes research and development in the social sciences and humanities and uses evidence-based models to inform and improve the breast cancer paradigm.
Massachusetts Breast Cancer Coalition
The Massachusetts Breast Cancer Coalition is dedicated to preventing environmental causes of breast cancer through community education, research advocacy, and changes to public policy.
Email: info@mbcc.org
Phone: (617) 376-6222
Institute for Healthcare Improvement and National Patient Safety Foundation
The Institute for Healthcare Improvement (IHI) and the National Patient Safety Foundation (NPSF) began working together as one organization in May 2017. The newly formed entity is committed to using its combined knowledge and resources to focus and energize the patient safety agenda in order to build systems of safety across the continuum of care.
Phone: (617) 391-9900
People of Faith for Access to Medicines
People of Faith for Access to Medicines (PFAM) will inspire, organize, and nurture a faith-based movement to make access to essential medicines a moral imperative and a fully-realized human right. PFAM builds on the foundation established by faith-based organizations playing a central role in U.S. health care, culture, and politics, the strengths of the existing access to medicines movement, and the historic legacy of faith communities making essential contributions to social movements.
Physicians for Responsible Opioid Prescribing
PROP’s mission is to reduce opioid-related morbidity and mortality by promoting cautious and responsible prescribing practices.
Email: sean.odonnell@supportprop.org
Phone: (646) 828-7079
The mission of The FED UP! Coalition is to create one voice calling for an end to the epidemic of addiction and overdose deaths attributed to opioids (including heroin) and other prescription drugs.
Email: feduprally@gmail.com
The National Coalition Against Prescription Drug Abuse
The National Coalition Against Prescription Drug Abuse (NCAPDA) is a non-profit organization established to generate nationwide awareness about the dangers of prescription drug misuse and abuse that can lead to addiction and overdose death. It is run via 100% volunteer support.
Email: info@ncapda.org
Phone: (925) 480-7723
Patient Safety America is an online forum by and for patients. Its mission is to inform the public on patient safety issues and advocate for accountability in the healthcare industry.
Email: john.t.james@earthlink.net
The Opioid Watch website will provide original news and commentary, while our newsletter will by disseminate crucial information about the opioid crisis to the very wide range of people who seek to combat it.
Email: info@opioidinstitute.org
Phone: (561) 776-0080
Generation Patient's goal is to empower young adults with chronic conditions to ensure they are given the opportunities and resources they need to thrive.
Canadian Organizations
Canadian Organizations
Breast Cancer Action Quebec is the only independent breast cancer organization in Canada whose mission is to work for the prevention of breast cancer and the elimination of environmental toxicants linked to the disease. We take on the tough issues ignored by mainstream organizations. We don’t take pharma money! Read our policy on corporate contributions here.
Website : http://www.acsqc.ca/
Email: info@acsqc.ca
Phone: Jennifer Beaman (514) 483-1846
The Canadian Health Coalition (CHC) is a public advocacy organization dedicated to the preservation and improvement of public health care in Canada. We come together to commit to ensuring that governments throughout Canada renew their commitment to protect and expand Canada’s public health care system to meet the present and future needs of all people living in Canada, based on the principles (public administration, universality, comprehensiveness, accessibility and portability) and conditions (no extra billing or user fees, or queue-jumping) of the Canada Health Act.
Phone: (613) 688-4973
Independent Voices for Safe and Effective Drugs (IVSED)
We are a patient group that includes medication safety advocates, researchers, health care providers, legal experts and academics who have personally been affected by issues of drug safety and effectiveness. We represent a unique perspective because we are patients and caregivers who will not accept pharmaceutical industry funding or support because we believe it would place us in a conflict of interest position.
Email: iv4sed@gmail.com
Phone: Sharon Batt 902-423-4679
Psychiatric Awareness Medication Group
Psychiatric Medication Awareness Group (PMAG) is a small group of British Columbia citizens concerned about the increasing use of psychiatric drugs in B.C. and Canada, and the potential harm associated with these drugs. PMAG believes that every citizen should be well-informed about every psychiatric medication they are advised to take, so that they can make responsible decisions about their own health. Informed and empowered citizens are able to take charge of their own lives.
Email: info@psychmedaware.org
Phone: Janet Currie: 778-679-5464
Our goal is to highlight and validate consumer experiences and heighten consumer involvement in adverse drug reaction reporting. In addition to documenting these experiences, we aim to facilitate networking among individual consumers and advocacy groups who share our concerns about the lack of adequate post-market monitoring by the pharmaceutical industry and Health Canada.
Email: colleenfuller3@me.com
Phone: 604-255-6601
Neutropenia Support Association, Inc
The Neutropenia Support Association Inc is a small community-based organization that has grown to have members all across the world. Our community also comes together to supply information to aid in research about neutropenia. The NSAI has been involved with the Severe Chronic Neutropenia International Registry whose goal is to establish a worldwide database of treatment and disease-related outcomes for persons diagnosed with SCN. We also follow and support many advocacy issues that deal with neutropenia and related diseases and disorders.
Phone: 1-204-489-8454
A patient-run organisation advocating for a national pharmacare plan to replace Canada’s inadequate, patchwork system of drug coverage.'
Email: bill@facesofpharmacare.ca
Phone: Bill Swan 902-412-1990
Canadian HIV/AIDS Legal Network
Canadian HIV/AIDS Legal Network is one of the world’s leading organizations tackling the legal and human rights issues related to HIV and advocating at both the policy and community levels. They work to defend the rights of people affected by HIV, from women, newcomers, and gay men, to prisoners, people who use drugs, sex workers, and men who have sex with men.
Email: Relliott@aidslaw.ca
Phone: +1 416-595-1666
Choosing Wisely Canada is a national campaign to help clinicians and patients engage in conversations about unnecessary tests and treatments and make smart and effective care choices.
Email: info@choosingwiselycanada.org
Phone: 1-416-864-6060 x77548
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