After a diagnosis of cancer, it is important to find credible information and seek support. People with rare types of cancer may find this challenging. Cancer.Net provides comprehensive information on rare cancer types, in addition to those most common. You can find information on the following topics:
- A broad range of rare adult and pediatric cancers, including information on diagnosis, treatment, clinical trials, areas of current research, what to expect after treatment, and questions to ask the doctor
- Cancer-specific national organizations that offer support to people with cancer and their families
- Support groups
- National Cancer Institute-designated comprehensive cancer centers and cooperative groups that specialize in the treatment of rare cancer types
- How to find an oncologist who specializes in the treatment of a rare cancer
- Clinical trials
Additional educational and supportive resources are listed below.
National Organization for Rare Disorders (NORD)
NORD is a nonprofit organization that provides information about rare diseases, patient resource organizations, and educational research programs. NORD databases give you access to more than 200 patient organizations and other support services. Online support is also available for people with a rare disease, their families and friends, and their caregivers.
Rare Cancer Alliance
The Rare Cancer Alliance provides information and support to children and adults with cancer. Its website includes patient forums, where you can communicate with others who may have the same type of cancer. In addition, it offers links to other websites with disease-specific information and educational resources on specific cancers.
Through a combined effort of the Children's Oncology Group and the National Childhood Cancer Foundation, CureSearch provides information on childhood cancers, treatment strategies, and wellness programs. A listing of local, national, and international organizations offers educational and supportive resources for children and adolescents with cancer and their families. Discussion forums provide an opportunity for patients and families to communicate with others who may share a similar experience.
National Cancer Institute (NCI)
The NCI website, a service of the National Institutes of Health, provides up-to-date information on rare adult and childhood cancers. An important feature of the website is the NCI clinical trials section, which provides a database of research studies that are open to patients, clinical trial results, and more. In addition, the NCI's Cancer Information Service (CIS) provides online support and live help to discuss any questions or concerns you may have.
Association of Cancer Online Resources (ACOR)
ACOR is an online resource guide providing information and support to people with cancer and their families and friends. You can access information for many cancers, find support groups, learn about research findings, and find clinical trials. Online discussion groups provide a forum where patients and caregivers can share experiences.
National Library of Medicine
The National Library of Medicine offers information on all areas of health care. Through its website, you can search medical literature using a service called PubMed.
National Comprehensive Cancer Network (NCCN)
The NCCN is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Information on rare childhood and adult cancer programs, cancer resources, and clinical trials can be found in the Cancer Resource section of its patient website.
American Association for Cancer Research (AACR)
The AACR provides patients and their families with information about rare cancers, clinical trials, and research findings. A section for patients and family members provides a comprehensive list of cancer resources.
Last Updated: February 03, 2011