What is the HeritX Prevention Advocacy Network?
Developing new preventive options for BRCA cancer requires two communities coming together for a better tomorrow. Those communities include the families with BRCA mutations who need to band together to advocate for and support research, as well as the researchers who need to hear their voices and implement a viable solution that meets their needs. The HeritX Prevention Advocacy Network (PAN) is the bridge between these two worlds.
PAN serves as a mechanism to gather and funnel patient input to the researchers dedicated to BRCA prevention research. Through PAN, families have the opportunity to express their needs, confident that they will be heard. That’s because HeritX incorporates community feedback into its research agendas and scientific conferences, spreading their message to the masses.
PAN is a coalition of people who:
- Care about cancer prevention, starting with inherited BRCA cancer
- Champion a prevention-focused public research agenda that addresses the medical needs of families facing inherited cancer
- Advocate for a societal effort to prevent cancer
PAN will engage families, patients, mutation carriers and professionals concerned with preventing BRCA cancer, as well as those more broadly interested in all types of cancer prevention.
Why is PAN important?
PAN builds awareness amongst BRCA-affected families who will benefit from research. In many cases:
- Families are unaware of their personal BRCA status or choose to ignore their status until they are diagnosed with a BRCA-related cancer
- People who are aware of the BRCA mutations often only correlate them to breast or ovarian cancers
- There is a lack of awareness about BRCA-caused male breast cancer, prostate cancer, pancreatic cancer and melanoma
PAN will help to change all of that. Through PAN, the goal is to expand community awareness of BRCA prevention research and facilitate community participation in prevention research.
Additionally, PAN provides education so that the community understands the relevant research and options, as well as their own critical role in research. For example, researchers need tissue samples from healthy BRCA carriers for their research into the earliest genetic changes in cells with BRCA mutations. Motivating the community to engage in research is part of PAN’s objectives.
What is PAN’s goal?
PAN will host workshops in major metropolitan areas that will include the scientific community, the BRCA community and supporters. These meetings will serve to present and update attendees on the current work being done in BRCA prevention research, as well as current standards of care for all BRCA-affected patients. The critical objective of these workshops is to foster engaged group discussion.
How can I help?
PAN sponsors have the opportunity to associate with an innovative prevention research organization, alas, aligning with a mission of precision medicine.
The key to maximizing participation in all PAN events is that they must be free to participants. Participant cost would be a barrier to diverse community engagement, which is a key objective for all PAN meetings. Becoming a sponsor would help bring that goal to fruition.
If you are interested in becoming a corporate sponsor and being at the forefront of cancer prevention, or if you are interested in joining PAN, contact HeritX to find out how to get started.
Prevention Advocacy Network Forum at Menorah Medical Center Kansas City Prevention Advocacy Network Form The Kansas City BRCA community enthusiastically embaced HeritX's mission of preventing inherited cancers, starting with BRCA cancers. More than [...]
Generations of Hope Forum in South Florida HeritX started 2018 with events in Los Angeles and South Florida, including a Prevention Advocacy Network (“PAN”) Forum, Generations of Hope in South Florida. Generations of Hope included [...]
September 2017 Joi Morris, author of Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer and HeritX co-founder, is the keynote speaker at this year's Our Genes conference sponsored [...]
Do you want to help shape the future of what prevention will look like for the next generation of BRCA carriers? You're invited.