Prepared by KELSEY CALHOUN
FORCE Priorities 2024
Director of Corporate Development
kelseyc@facingourrisk.org
512.431.2728
Population Served
BY CANCER
BY Gene/Syndrome
prostate • Pancreatic • Endometrial •
Breast • Male Breast • Colorectal • Ovarian •
BRCA1/2 • Lynch Syndrome •
CDH1 • CHECK2 • PALB2 • PTEN • RAD51C/D • Others •
APC • ATM • BRIP1 • TP53 •
Previvors
Patients Caregivers Family Members
Patient Advocates Healthcare Professionals
Survivors
FORCE PILLARS
Education
Healthcare Provider Resource Center
Syndicated Content
Joining FORCEs Conference
Hereditary Cancer Library
XRAY
Support
Support Meetings
Resource Navigation
Peer Navigation Program
Volunteer FORCE Training
Digital Support
Research
FRAT Program
Research Matching Tool
Syndicated Content
Advocacy/Public Policy
State Advocacy
Advocacy Day
PALS Program
Advocacy Education Platform
Federal Advocacy
Education
Healthcare Provider Resource Center
Syndicated Content
Joining FORCEs Conference
Hereditary Cancer Library
XRAY
Hereditary Cancer Library
Healthcare Provider Resource Center
Joining FORCEs Against Hereditary Cancer
Our website contains a multi- media, comprehensive library of plain-language, expert-reviewed information on the latest hereditary cancer research and guidelines organized by gene and cancer type. We focus on clinically relevant information to assist medical decision-making.
FORCE’s resource center gives healthcare providers and advocates access to FORCE brochures, disclosure letters by mutation, and other materials that can be personalized with their logo; contact information can be printed on demand.
Joining FORCEs Against Hereditary Cancer is an international conference designed to empower individuals and families facing hereditary cancer.
XRAY People need accurate, relevant information about cancer in order to make informed decisions about their health. Media reports on cancer research can be inaccurate or misleading and research reports themselves may be diffcult to understand. Our eXamining the Relevance of Articles for You (XRAY) program assesses the accuracy and relevance of media articles and summarizes research in plain language so people can understand their relevance to their medical care better. These articles are available in English and in Spanish.
Syndicated Content Despite signifcant advances in cancer genetics, there is a national lack of resources, support and advocacy efforts dedicated to those affected by hereditary cancers. Many organizations overlap with FORCE in terms of the community served but do not have access to hereditary cancer resources. Our syndicated content platform allows partners to share customized, expert-reviewed, up-to-date content tailored to their constituents' needs with a focus on underserved populations.
2024 Priorities
Revise and tailor our brochures and resource center publications to increase relevance, representation and accessibility for different constituent groups.
We will review and publish 40 new XRAY reports on emerging research and high-priority topics in English and Spanish. Increase the number of partners syndicating our XRAY content from 18 to 30 with a focus on organizations supporting marginalized, under- resourced groups as well as those focused on people with pancreatic, prostate and endometrial cancers. Launch our new Healthcare Provider Resource Center with a goal of onboarding 30 new healthcare systems and medical centers.
Expand our hereditary cancer library to include additional cancers with a link to inherited mutations such as stomach, thyroid and kidney.
Improve accessibility and engagement by updating the hereditary cancer library, prioritizing plain language and cross-cancer risks.
Support
Support Meetings
Resource Navigation
Peer Navigation Program
Volunteer FORCE Training
Digital Support
Peer Navigation Program
VolunteerFORCE
Digital Support
FORCE has over 300 volunteers, including state advocacy leaders, resource navigation, research advocates, and one-to-one and group support. Our volunteers are trained through our FORCE Academy, which has dozens of role-specifc on-demand trainings.
Our Peer Navigation Program (PNP) matches users to trained, compassionate volunteers who share their mutation and situation and provides them with a personalized guide with expert- reviewed information and resources.
Our message boards and private FB groups allow people to connect in a secure environment with others affected by hereditary cancer to share their experiences and offer peer-to-peer support.
Finding resources, particularly for underserved communities, is a real issue. We address these disparities by connecting our community, through trained volunteers, to the help they need, including finding experts in their area, providing financial assistance, and assisting with insurance appeal letters. Resource Navigation
Support Meetings
Trained volunteers that consist of community members and genetics experts lead our virtual community support meetings. We offer support groups by mutation, Español Caregivers/Parents, LGBTQIA+, Lynch Syndrome, Men, People of Color, Beyond BRCA & Lynch: ATM, CHEK2, PALB2 & Other Mutations Previvors, Survivors, Young Previvors and Young Survivors.
2024 Priorities
In order to improve access to care, FORCE will launch a resource navigation program to guide constituents to healthcare experts, fnancial aid resources, and other options to help pay for care.
Create a targeted recruitment plan focused on identifying new volunteers who represent all our constituents, including Black, Indigenous, Asian Pacifc, and Latine people, as well as all people in the LGBTQIA community. Update the peer navigation training and resources to refect new genetic mutations and the increased need for support services for Previvors. We will also be increasing support for survivorship and well-being.
Grow our virtual support meetings to address health disparities and improve health outcomes for people from underserved and marginalized communities. Develop post-support meeting resource guides with additional relevant information for each community served to address their ongoing hereditary cancer needs.
Research
FRAT Program
Research Matching Tool
Syndicated Content
FRAT
Research Matching Tool
Syndicated Content
FORCE designed the only clinical research database and matching tools to help people with inherited mutations fnd and enroll in studies for which they may be eligible by prioritizing studies enrolling people with inherited mutations or relevant biomarkers and summarizing studies, eligibility criteria and titles in plain language, so people can see at a glance what the study is about and for whom it is relevant for.
Our research syndication platform dynamically streams open studies to our partner organizations. Partners can select the trial categories most relevant to their community. Through this program, we will greatly increase exposure and enrollment in these trials.
The FORCE Research Advocate Training (FRAT) program trains constituents to engage in research advocacy on behalf of the hereditary cancer community. Advocates use their personal experiences to help guide hereditary cancer research. FORCE collaborates with researchers who need assistance and matches volunteers to study opportunities based on their cancer status, situation, demographics, experience and the specifc needs of the investigator team.
2024 Priorities
Launch a research-syndicated content platform to disseminate clinical trials and research studies through partners’ sites. Partners can select the trials and studies most relevant to their community. Our initial priority will be recruiting partners focused on underserved and minority populations to increase enrollment in relevant studies. Create a targeted FRAT recruitment plan focused on identifying new volunteers who represent all our constituents, including Black, Indigenous, Asian Pacifc, and Latine people, as well as all people in the LGBTQIA community. Additional recruitment efforts will be placed on people with mutations beyond BRCA and Lynch syndrome.
Proactively connecting with researchers to drive collaborations and increase participant enrollment in studies focused on preventive care, PARP Inhibitors, overcoming targeted therapy drug resistance, rare/deadly hereditary cancers, and studies that address health disparities.
Increase our engagement with researchers during early development to identify gaps in research, provide input into study design, communicate study description, eligibility and study results in plain language .
Advocacy/Public Policy
State Advocacy
Advocacy Day
PALS Program
Advocacy Education Platform
Federal Advocacy
Federal Advocacy
State Advocacy
PALs
Our federal advocacy efforts focus on ensuring that the needs of those with and at risk of hereditary cancers are represented. These policy efforts aim to address a broad range of issues from affordable access to genetic counseling, testing, screening and prevention to biomarker testing and cancer therapies to patient navigation, genetic protections and more.
FORCE's state advocacy efforts spearhead and support initiatives that mirror our federal efforts in addition to state-specifc policies affecting coverage and reimbursement under commercial insurers and Medicaid.
Policy Advocate Leaders (PALs) Training helps educate constituents on how to engage effectively in public policy advocacy for themselves and the hereditary cancer community.
Advocacy Day Advocacy Day provides passionate people the opportunity to meet virtually with members of Congress, urging them to support policies that improve the lives of individuals and families facing hereditary cancers.
Advocacy Education Platform Our grassroots Advocacy Platform educates and mobilizes the community by highlighting key legislative efforts, facilitating emails to lawmakers, allowing people to search and view legislation, sign up for alerts, fnd their elected federal and state offcials, register to vote, fnd polling locations and access to additional voter resources.
2024 Priorities
Spearhead and grow state and federal policy initiatives with a focus on access to high-risk screening, risk-reducing interventions, fertility services, physician-recommended treatments and expanding laws banning genetic discrimination. Address health disparities and improve access to quality care by focusing on policies that eliminate or minimize out-of-pocket costs for patients. Increase the number of participants, the number of states represented, and the number of meetings at our annual Advocacy Day.
Continue to grow our Patient Advocate Leaders (PALs) Program to include diverse and representative participation from minority and historically underserved populations. Develop a tracking tool featuring information about state laws related to screenings and other health services needed by the high-risk, hereditary cancer population. Grow our policy impact at the state level by increasing our coverage from 25 to 35 states and launching a state priorities and laws section on our website.
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