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, VietnameseMission:
In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.
- Provides educational materials both online and in print about cancer, including blood cancers, as well as related information on topics 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
- Cancer Survivors NetworkSM, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings.
- 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
- Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges
- American Cancer Society’s Wig Bank - Provides free wigs from limited supply to needy patients suffering hair loss due to cancer treatment. Intended for those with insufficient insurance coverage for cranial prostheses (wigs).
Population served: Patients and health professionals interested in CLL information
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.
Population served: Patients, caregivers and health professionals
To address the unmet needs of the CLL patient and related blood cancer communities
- Provides disease, treatment and clinical trial information
- Offers quarterly newsletter “The CLL Tribune”
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 SpanishMission:
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.
Population served: Anyone seeking information on chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL)
To provide helpful information and resources to patients, caregivers, physicians, and others affected by CLL or SLL.
- Lymphoma Research Foundation (LRF) provides disease, treatment and clinical trial information online and by phone
- LRF also offers publications, videos, webcasts, in person workshops and educational forums, a variety of support services, plus advocacy and public policy programs.
Population served: People with blood cancer (and lung or head & neck cancer), caregivers, health professionals
To provide expert-mediated information on current and emerging cancer management options in order to empower patients, caregivers, and health professionals to become direct partners in cancer care.
- Offers cancer information and video library, podcasts, email newsletter and online discussion forums.
Population served: Patients, caregivers, health professionals, researchers
Other language(s): Spanish, FrenchMission:
To improve outcomes for patients by advancing research into the causes and treatment of hairy cell leukemia, as well as by providing educational resources and comfort to all those affected by hairy cell leukemia.
- Provides information about hairy cell leukemia, referrals to health care centers and clinical trials
- Organizes annual seminars bringing patients, clinicians and researchers together to learn from each other about the latest advancements in diagnosis and treatment
- Offers an annual research grants program for medical professionals.
Population served: Patients and health professionals
To transform the diagnosis and treatment of immune-mediated diseases such as cancer through immunosequencing applications.
- Provides information about the tools and techniques used before, during and after treatment to measure blood cancers
- Explains MRD (minimal residual disease) testing
- Website offered by Adaptive Biotechnologies.
Population served: LGL Leukemia patients, caregivers and health professionals worldwide
Dedicated to creating awareness, resources, support and research funding for LGL leukemia
- Provides disease and treatment information
- Offers online support group through Facebook
- Lists resources
- Refers to and supports the LGL Leukemia Registry at University of Virginia.
Population served: Patients, caregivers, health professionals worldwide
To bring education, information and emotional support to MPN patients; to increase awareness amongst patients, physicians and caregivers of myeloproliferative neoplasms.
- Serves patients with Chronic Myeloid Leukemia, Essential Thrombocythemia, Myelofibrosis, Polycythemia Vera and associated disorders
- Provides disease, treatment and clinical trial information
- Offers MPN-NET, an online support group, as well as face to face support groups
- Offers conferences, newsletters and online videos
- Provides referrals to specialists and links to medical literature.
Population served: People with cancer and their caregivers in the U.S.
Other language(s): SpanishMission:
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.
Population served: Patients and caregivers
Other language(s): French, SpanishMission:
To provide cancer patients with the resources and information needed to live well with cancer.
- Provides an online portal of cancer information in a library of programs, organized into ‘health centers’. Information from medical conferences as well as interviews featuring top medical experts are continually added to the site.
Population served: Patients, caregivers, healthcare professionals, researchers
To provide education and support to patients and to encourage research into these rare cancers
- Provides disease, treatment and clinical trial information for the T-cell leukemias and lymphomas
- Organizes free educational forums
- Offers physician referrals, e-newsletter and links to helpful resources
- Supports scientific research on the T-cell leukemias and lymphomas.
Population served: Eye cancer patients and their families, health professionals
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
- Funds research to find cures for patients with ocular tumors, macular degeneration, and related eye diseases
- Provides up-to-date treatment information
- 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
Population served: Children with JMML and their families, researchers
To cure Juvenile Myelomonocytic Leukemia and to improve the quality of life of JMML patients and families worldwide through research, education, advocacy, and charity.
- Offers disease and treatment information
- Provides financial grants of up to $500 for families in need
- Little Heroes Comfort Program provides a child diagnosed with JMML a special mailed package containing age-appropriate toys, crayons, coloring books and other items
- Online forum for support and education is planned
- Sponsors annual symposium for researchers, JMML patients and their families.
Population served: Patients living with CML and their families
To bring hope to individuals living with CML through educational resources, access to CML specialists, and a living, breathing network of others that can share their personal CML experiences and successes.
- CML Connection Program provides a patient support network
- Facilitates peer-to-peer matching
- Provides referrals for caregivers, counseling, patient assistance programs, respite, blood and marrow drives
- Offers Ask The CML Expert online portal
- Sponsors educational events, wellness programs and retreats.