Find info & services for the IBC community
There are a number of organizations that offer information and support services to IBC patients and their families and caregivers. Some groups focus on specific types of cancer; others on demographic groups. A few are large organizations with many types of services. Explore this list of organizations to find access to clinical trials, the latest news, or community with others like yourself.
- BreastCancerTrials.org is a patient-friendly resource for finding a breast cancer clinical trial. Includes search for metastatic breast cancer, and a trial alert system to learn about newly listed trials that match your situation.
- Cancer Support Community has both patient, family and caregiver resources and programming. Includes local support groups, a patient experience registry and more.
- Cancer.Net is the patient portal for trusted, compassionate information for people with cancer and their families and caregivers. It is provided by the American Society of Clinical Oncology (ASCO), the voice of the world’s cancer physicians and oncology professionals.
- Dr. Susan Love Research Foundation encourages participation in research initiatives such as The Health of Women Study and the Army of Women Program.
- For The Breast of Us is an organization to uplift women of color affected by breast cancer by sharing stories that educate, inspire and connect.
- FORCE: Facing Our Risk of Cancer Empowered is dedicated to Improving the lives of individuals and families affected by hereditary breast, ovarian, and related cancers. FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.
- Living Beyond Breast Cancer (LBBC) provides news, opinions, programs, events and a yearly conference. Great source of recorded and live webinars on many topics of interest to the breast cancer community. The Inflammatory Breast Cancer Research Foundation often lists upcoming webinars in our Focus on IBC newsletter.
- The Lobular Breast Cancer Alliance is a national network of patient-advocates with lobular breast cancer working with breast cancer researchers and clinicians. LBCA advocates for Invasive Lobular Cancer research and educates about lobular breast disease.
- Lymphatic Education and Research Network is a comprehensive site with many resources related to lymphedema for patients and medical professionals. Several downloadable resource booklets are available.
- The Male Breast Cancer Coalition is a patient advocacy organization to bring people together to educate the world about male breast cancer.
- Metastatic Breast Cancer Alliance provides patient information and support services to transform and improve the lives of people living with metastatic breast cancer. Inflammatory Breast Cancer Research Foundation is a member organization and represents the inflammatory breast cancer patient voice to that group.
- National Comprehensive Cancer Network Patient Resources (nccn.org) provides treatment guidelines designed for patients including one specifically for inflammatory breast cancer.
- National Lymphedema Network provides education and guidance regarding lymphedema management to patients, healthcare professionals, and the general public.
- SHARE provides dedicated, experienced support for women facing breast or ovarian cancer, with an emphasis on helping underserved groups including Latinas. Share has some telephone groups for patients and caregivers.
- Sisters Network, Inc. is a national African American breast cancer survivorship organization committed to increasing local and national attention to the devastating impact that breast cancer has in the African American community.
- Young Survival Coalition (YSC) helps young adults to face breast cancer together. Meet and connect with the YSC community nationally and locally
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