Our Progress

FORCE is proud of the progress we have made in support, research and advocacy that betters the lives of people in our community.

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Our Progress

Our slide show illustrates the many ways that FORCE efforts are improving outcomes for the HBOC community.

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Issue

The hereditary breast and ovarian cancer (HBOC) community is an underrepresented subset of cancer stakeholders. Overshadowed by larger, higher-profile cancer groups, people and families with HBOC face challenges that are misunderstood or ignored.

Action

FORCE is a nonprofit organization created by and for HBOC-affected people and families. Our programs unite this population into a cohesive group with an amplified voice, higher visibility and greater impact.

Results

Our 15-year effort to support, educate, advocate and improve lives drives greater awareness, more research and better outcomes for our community.

Our Progress - Overview

Issue

The unique needs of the HBOC community are often neglected in guidelines and policies that are intended for the general population. These gaps affect access to health services.

Action

FORCE advocates for policies to prohibit genetic discrimination, to outlaw gene patents, promote hereditary cancer research, and to assure access to genetics and preventive services.

Results

The passage of the Genetic Information Nondiscrimination Act prohibits discrimination in health insurance and employment. The Supreme Court of the United States ruled that genes cannot be patented. National guidelines provide more access to cancer preventive services and consider the needs of the HBOC community.

Our Progress - Advocacy

Issue

HBOC affects entire families, reaching every aspect of people's lives. Confronting HBOC can belonely and overwhelming.

Action

FORCE built a nationwide peer-to-peer outreach program offering in-person, online and phone support.

Results

Over 100 trained FORCE volunteers provide in-person and telephone support. Our online message boards are accessible 24/7 and include over 350,000 posts from 6,000 users. With FORCE no one has to face HBOC alone.

Our Progress - Support

Issue

Genetic testing for BRCA mutations identified a new category of patients: undiagnosed people with extraordinarily high cancer risk. Unsupported, they struggled with unique medical and psychosocial needs that differed from cancer survivors.

Action

FORCE coined the term cancer previvor (survivor of a predisposition to cancer), providing these individuals with a label and identity. We organized the community into a cohesive unit to champion inclusion of this group as stakeholders in cancer research and advocacy.

Results

Chosen as a Time Top 10 Buzzword, previvor is now the accepted term for high-risk people. FORCE successfully established National Previvor Day to raise awareness and drive more resources for our constituents.

Our Progress - Support

Issue

People affected by HBOC must make life-changing medical decisions requiring reliable, current, expert information on all aspects of HBOC, including genetic testing, risk-management, cancer treatment, family planning and quality of life.

Action

With input from world experts in cancer and genetics, we translate the research and guidelines on HBOC into lay-level information that is accessible and understandable to everyone.

Results

FORCE's expert-reviewed online and print content are made available for free to thousands of people annually. Our programs reduce anxiety, boost confidence, and empower people who must make difficult medical decisions.

Our Progress - Education

Issue

Improving medical options requires greater investment in HBOC research. More research creates an urgent demand for participants. Failure to fill and complete clinical trials seriously jeopardizes the future of HBOC research.

Action

FORCE crusades for more hereditary cancer-specific research. We assist research study design and enhance participation and enrollment. Our training program prepares HBOC stakeholders to become engaged in research advocacy.

Results

An unprecedented number of HBOC-specific studies are now open. We have helped over 5,000 patients enroll into HBOC-specific research registries, clinical trials and other studies, leading to improved care and outcomes for our community. FORCE is part of a collaboration that will transform research by focusing on Patient-Centered Outcomes.

Our Progress - Research

Learn about our accomplishments and how you can help.

Recognize a Loved One

The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast and ovarian cancer community.

Recognize a Loved One

FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.