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American Brain Tumor Association (ABTA)
Population served: Brain tumor patients and their families in the United States
Other language(s): Spanish
Mission: ABTA is committed to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.
- Provides care consultations by phone or by email, and will help find information, resources and tools that are needed by patients and caregivers.
American Cancer Society (ACS)
Population served: People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States
Other language(s): Spanish, Chinese, Korean, Vietnamese
Mission: In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.
- Provides education materials both online and in print about cancer, including blood cancers, as well as related information such as diet, exercise, complementary and alternative medicine, and disease statistics
- Offers support services via online discussion boards and in-person support groups through local chapters
- Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
- Look Good, Feel Better program for female adults and teens helps with self-image during chemotherapy and radiation treatments
- Offers financial support for such needs as travel expenses, temporary lodging while receiving treatment far from home, and education scholarships
- Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges (please check with ACS for more information)
- Offers camps for children currently in treatment or in remission, ages 5 to 21.
CLL Global Research Foundation
Population served: Patients and health professionals interested in CLL information
Mission: To abolish chronic lymphocytic leukemia (CLL) as a threat to the life and health of patients.
- Aims to fund patient-oriented projects with rapid clinical applications and to expand the knowledge of CLL on a global scale
- Provided seed money for the formation of two CLL Research Consortiums, one in Australia and one in Israel.
CLL Information Group (CIG)
Population served: Anyone seeking information on chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL)
Mission: To provide disease-specific information to CLL and small lymphocytic lymphoma (SLL) patients and caregivers; to increase awareness about the disease; and to gain increased visibility in order to achieve greater support from the medical community.
- Serves as a pathway to inform members of events and discoveries of importance
- Hosts seminars, discussions, and forums dealing specifically with CLL/SLL
- Develops relationships with doctors and experts in the field, so that people with CLL can benefit from their knowledge and experience with the disease and bridge the gap between the medical community and patients
- Offers an interactive, online discussion group, often attended by medical professional who provide information.
CML Advocates Network
Contact: Website only
Population served: People diagnosed with chronic myeloid leukemia (CML), worldwide
Other language(s): Spanish and French. European Leukemia Net Treatment Guidelines available in Chinese, English, French, German, Hebrew, Hungarian, Italian, Macedonian, Polish, Serbian, and Spanish
Mission: To facilitate and support best practice-sharing between patient group organizers across the world.
- Informal online organization designed, published and moderated by CML patients and carers who are registered patient group advocates and organizers.
- Provides a worldwide web directory of CML patient groups, to allow patient groups to find national support groups in another country.
- Provides a platform of communication for CML patient advocates
- Builds a knowledge base in the form of a Wiki (like Wikipedia, but dedicated to CML patient advocacy)
- Provides an area where educational material is ready for download to patient advocates.
Cutaneous Lymphoma Foundation
Population served: Anyone seeking information on cutaneous lymphoma (CL)
Mission: To support every person with cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research.
- Provides education and support to patients diagnosed with CL
- Information on website is designed to help physicians, nurses and other health professionals access resources related to cutaneous lymphoma.
International Waldenstrom's Macroglobulinemia Foundation (IWMF)
Population served: People diagnosed with Waldenstrom's macroglobulinemia and their loved ones, worldwide
Other language(s): Spanish, French
Mission: To offer mutual support and encouragement to the Waldenstrom's macroglobulinemia community and others with an interest in the disease.
- Provides information and educational programs that address patients' concerns
- Promotes and supports research leading to better treatments, and ultimately, a cure
- Hosts online forum, telephone and email lifeline network
- Offers support groups for patients, caregivers and families.
Lymphoma Research Foundation (LRF)
Population served: Patients with lymphoma and their families, caregivers, health professionals
Other language(s): Spanish, other languages available by phone
Mission: To fund innovative lymphoma research; to provide people with lymphoma and health professionals with up-to-date information about this type of cancer; to eradicate lymphoma and serve those touched by this disease.
- Provides Lymphoma Helpline and Clinical Trials Information Service
- Provides educational materials, conferences, webcasts
- Offers limited financial assistance to patients in active treatment
- Lymphoma Support Network is a one-to-one peer support program that matches lymphoma patients or caregivers with volunteers who have had similar lymphoma-related experiences
- Funds biomedical research focused on the origins, treatment and identification of a cure for lymphoma
- Raises public awareness of the disease.
Mantle Cell Lymphoma Consortium
Contact: (212) 349-2910
Population served: Patients diagnosed with mantle cell lymphoma (MCL) and healthcare professionals worldwide
Mission: To identify effective and curative treatment strategies for MCL. It fosters collaboration, sharing of information and laboratory resources, as well as multi-institutional recruitment of clinical trials among groups working in MCL research.
- Provides a glossary of medical terms and a search tool for clinical trials
- Provides a list of members (medical professionals) and the cancer center with which they are affiliated
- Offers research updates
National Cancer Institute's Cancer Information Service
Population served: People with cancer and their caregivers in the U.S.
Other language(s): Spanish
Mission: To provide accurate, up-to-date, and reliable information on cancer that is easy to understand; this confidential service is a federally funded cancer education program.
- Offers trained information specialists who can answer cancer-related questions on a range of cancer topics, including the most recent advances in cancer treatment.
The Eye Cancer Foundation - Eye Cancer Network
Population served: Eye cancer patients and their families, health professionals
Mission: To create a world-class center of excellence for patients and their families diagnosed with ocular tumors, macular degeneration, and related ophthalmic conditions.
- Formerly the EyeCare Foundation
- Provides up-to-date treatment information
- Funds research to find cures for patients with ocular tumors, macular degeneration, and related eye diseases
- Coordinates clinical trials to evaluate new methods of diagnosis and treatment
- Offers family and patient support programs to ease emotional stress and real-life adjustment issues related to the severe forms of these conditions
- Empowers patients to find the resources to improve their lives