Hereditary breast and/or ovarian cancer syndrome
A genetic condition characterized by hereditary susceptibility to breast and/or ovarian cancer. It can be defined using family history criteria or through identification of germline pathogenic variants (GPVs) in clinically validated HBOC genes. However the genetic basis of about half of clinical HBOC is currently unknown or unexplained by single-gene variants and approximately half of individuals who harbour PVs in HBOC genes do not have a suggestive family history.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version April 2024
Newly diagnosed with
Hereditary breast and/or ovarian cancer syndrome?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
FELIS HEALTHCARE FOUNDATION INC
The mission is to provide free health care services, education, and training to the most vulnerable, poorest, and underserved.The vision is ever-increasing access to medical treatment, better education, and nutrition, especially for those unable to pay for the necessary products and services.This approach helps us transform the lives of millions of people and address data gaps on different issues,
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
My Faulty Gene
My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.
My Little Sunshine Foundation
My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.
SALUS
Educate and provide resources to POC with Rare Cancers
Speaking on Cancer Patient Advocacy
We seek to educate all on cancer from the importance of self-advocacy and how to go about doing that, how to advocate for loved ones and friends with cancer, how to work with fellow employees diagnosed with cancer, the basics of cancer, and much more.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
The Assistance Fund
The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses. We currently manage more than 80 disease programs, each of which covers all FDA-approved treatment for the disease named in the program. Since 2009, TAF has helped nearly 180,000 people access critical treatment for life-threatening, chronic, and rare diseases.
Unfixed
Unfixed produces media that elevates stories of people living with chronic illness, rare disease and disability. The Unfixed portfolio of projects demonstrates that living well is not about eradicating our wounds and weaknesses but understanding how they complete our identities and equip us to help others. Current and past productions include multiple mini-series, a podcast and feature film.
Clinical Trials
For a list of clinical trials in this disease area, please click here.