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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
- Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges.
- Offers camps for children currently in treatment or in remission, ages 5 to 21.
- American Cancer Society Youth Scholarship Awards Program- designed to provide young cancer patients and survivors assistance pursuing higher education (college or tech/vocational school).
- 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).
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.
- 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.
- 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
Hairy Cell Leukemia Consortium
Population served: Patients, providers and the research community
Mission: To advance understanding of Hairy Cell Leukemia (HCL) and to enable patients and those who care for them increased access to state-of-the-art clinical expertise and therapies. The Consortium seeks to discover new knowledge for improving the treatment and management of HCL.
- Provides online communities for patients, providers and researchers to share knowledge.
MPN Education Foundation
Population served: Patients, caregivers, health professionals worldwide
Mission: 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.
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
The JMML Foundation
Population served: Children with JMML and their families, researchers
Mission: 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.
The National CML Society (NCMLS)
Contact: (877) 431-2573
Population served: Patients living with CML and their families
Mission: 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.