Support Group Resources

Breast Cancer

  • FORCE: Committed to providing resources and support to individuals at high-risk of getting breast and ovarian cancer due to their family history and genetic status.

 

  • Bright Pink: Focused on the prevention and early detection of breast and ovarian cancer in young women, while providing support for high-risk individuals.

 

  • Susan G. Komen: Dedicated to ensuring quality care for individuals with breast cancer by educating, supporting research, offering grants and advocating for better breast cancer policy.

 

  • Right Action for Women: Provides aid to individuals who are at increased risk for breast cancer and do not have insurance or the financial flexibility to cover the high costs associated with breast screenings.

 

Male Breast Cancer

  • His Breast Cancer: Information about male breast cancer. Here to inform, to educate, bring awareness, and to teach prevention regarding breast cancer in men.Insight and education on male breast cancer.

 

Ovarian Cancer

  • National Ovarian Cancer Coalition: Committed to raising awareness of ovarian cancer in communities across the country and to providing education, support and hope for women with ovarian cancer and for their families.

 

Colorectal Cancer

  • Colon Cancer Alliance: An organization dedicated to colon cancer prevention, funding colon cancer research and providing support to patients.

 

  • Hereditary Colon Cancer Foundation: A nonprofit organization serving the hereditary colorectal cancer community.

 

 

Prostate Cancer

  • Us TOO International Prostate Cancer Education & Support Network: The mission of Us TOO is to provide hope and improve the lives of those affected by prostate cancer through support, education, advocacy and awareness.

 

Melanoma

  • American Melanoma Foundation: An organization supporting melanoma research, and providing advocacy and public awareness of melanoma

 

Pancreatic Cancer

  • National Pancreas Foundation: An organization committed to funding pancreatic cancer research, and providing support and education about pancreatic cancer.

 

Familial Hypercholesterolemia (FH)

  • The FH Foundation: A patient-centered non-profit dedicated to research, advocacy, and education of all forms of familial hypercholesterolemia.

 

Family Communication

  • Kintalk: An educational and family communication site for individuals and their families with hereditary cancer conditions.

 

Gene Specific

  • Lynch Syndrome International: Primary mission is to provide support for individuals afflicted with Lynch syndrome.

 

  • CAPP3:  The primary focus of the Cancer Prevention Project 3 (CAPP3) is to find the right dosage of Aspirin for people with Lynch syndrome. Learn more about the benefits of aspirin for those with Lynch Syndrome at CAPP3.

 

  • Sharsheret: Sharsheret is a national not-for-profit organization supporting young Jewish women with BRCA mutations.

 

  • No Stomach For Cancer: Supporting research and uniting the caring power of people worldwide affected by stomach cancer and Hereditary Diffuse Gastric Cancer caused by CDH1 mutations.

 

  • PTEN Foundation: Founded with a mission to educate about PTEN syndromes, provide financial support to patients, support research, and to promote awareness.

 

  • Li-Fraumeni Syndrome (LFS) Association: Provides a wide range of information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome caused by TP53 mutations.

 

 

Cardiomyopathy

  • American Heart Association: Focused on building lives free of heart disease by providing accessible education and funding innovative research.

 

 

  • Hypertrophic Cardiomyopathy Association: Provides support, education, and advocacy as well as advancing research, understanding and care to those with hypertrophic cardiomyopathy.

 

Arteriopathies

 

  • Marfan Foundation: Provides information and support to healthcare providers, caregivers, and families affected by Marfan syndrome and related disorders, including FTAAD and Ehlers-Danlos syndrome.

 

 

  • Genetic Aortic Disorders Association of Canada: Supports individuals living with genetic arteriopathies through awareness, education and research opportunities.

 

 

 

 

  • The John Ritter Foundation for Aortic Health: Dedicated to improving the medical management and identification of individuals at risk for arterial dissections and the treatment of thoracic aortic disease through medical research.

 

 

 

 

  • Vascular EDS Emergency Passports: Collagen Diagnostics offers a free emergency room passport for individuals with disease-causing mutations in COL3A1. This passport can assist physicians and families in an emergency situation by providing life-saving information for diagnosis and treatment.  
    • - For passport please email Dru Leistritz-Kessler: dru2@u.washington.edu

 

 

Arrhythmias

  • Heart Rhythm Society: Provides information sheets on types of arrhythmias and associated treatments, risk factors, signs and symptoms.

 

  • Sudden Arrhythmia Death syndromes (SADS): Advocates for nondiscriminatory treatment for people who are diagnosed with a SADS disorder. SADS is committed to supporting efforts that will improve the quality of life for patients with heart rhythm abnormalities.

 

 

  • Arrhythmia Alliance: Working together to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias.  This organization provides resources to help individuals and clinicians manage arrhythmias successfully. Based in the UK with international resources as well.

 

Country Specific Resources

Canada

 

  • Canadian Cancer Society: A national, community-based organization of volunteers whose mission is the eradication of cancer and the enhancement of the quality of life of people living with cancer. The Canadian Cancer Society provides free support and information to anyone affected by breast cancer, or at high risk.

 

  • Ovarian Cancer Canada: Dedicated to overcoming ovarian cancer, supporting women living with the disease and their families, raising awareness among the general public and healthcare professionals and funding research to develop early detection techniques, improved treatments and, ultimately, a cure.

 

  • Hereditary Breast and Ovarian Cancer Society: Provides supportive connections and essential information about specialized services and resources.

 

  • Prostate Cancer Canada: The leading national foundation dedicated to the elimination of the most common cancer in men through research, advocacy, education, support and awareness.

 

  • Wellspring: A network of community-based support centres offering programs and services that meet the emotional, social, practical and restorative needs of people living with cancer and those who care for them. Wellspring programs are offered free of charge

 

Australia/New Zealand

 

  • Pink Hope: Australian support network for individuals at high risk for getting breast cancer.

 

  • Breast Cancer Network Australia: A national organisation for Australians personally affected by breast cancer. It works to ensure that Australians diagnosed with breast cancer and their families receive the best information, treatment, care and support possible.

 

  • Breast Cancer Aotearoa Coalition New Zealand: Provides information, support and representation for those with breast cancer so they can make informed choices about their treatment and care.

 

 

  • Ovarian Cancer Australia: A national not-for-profit organisation providing support and advocacy for people affected by ovarian cancer and awareness of ovarian cancer and prevention options.   

 

  • Lynch Syndrome Australia: Aims to empower Australians to investigate their risk, educate the medical profession, evolve campaigns to highlight this genetic condition and achieve equity in access, diagnosis, treatment and hope

 

  • Prostate Cancer Foundation Australia: The national body for prostate cancer in Australia that funds research and other efforts to reduce the impact of prostate cancer on the community.

 

 

  • Bowel Cancer Australia: An organisation dedicated to bowel cancer prevention, early diagnosis, research, quality treatment and care, and provides practical and emotional support for the growing number of Australians affected by bowel cancer.

    • - Visit: https://www.bowelcanceraustralia.org/

 

  • Cancer Voices Australia: An advocacy organisation representing Australians affected by cancer that aims to ensure the voices of people, their carers and families affected by cancer are heard at a national level.

 

Israel

  • BRACHA: The BRACHA website is for all those who are affected by Hereditary Breast and Ovarian Cancer (HBOC) and other hereditary cancers.

 

  • One in 9: Works to raise public awareness about breast cancer and promote breast health in Israel, and offers special support groups.

 

England, Ireland, Scotland, Wales

 

  • Breast Cancer Care: Providing care, information and support to people affected by breast cancer.

 

  • Cancer Support UK: Provides practical and emotional support to people living with cancer, both during and after the treatment period, around the UK.

 

  • Northern Ireland Cancer Network: Works in collaboration with Health and Social Care organisations, academic organisations, charities, cancer specialists and service users to improve cancer services and to implement national and local NHS strategies.

 

South Africa

 

  • Breast Health Foundation: A Not for Profit Company dedicated to educating the public on breast cancer and breast health, increase awareness and empower women.

 

  • The Cancer Association of South Africa (CANSA): A non-profit organisation that enables research, educates the public and provides support to all people affected by cancer.

 

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