American Cancer Society (ACS)Contact: 800-227-2345
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
- 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).
CLL Global Research FoundationContact: Website only
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.
CLL SocietyContact: Website only
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”
CML Advocates NetworkContact: 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 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.
Global Resource for Advancing Cancer Education (GRACE)Contact: 1-888-501-1025 or info@cancerGRACE.org
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.
Hairy Cell Leukemia FoundationContact: 224-355-7201
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.
LGL Leukemia Program at UVAContact: 434-924-9333
Population served: Anyone diagnosed with Large Granulocytic Lymphocyte (LGL) Leukemia
To help in the diagnosis and treatment of LGL Leukemia.
- Based at the University of Virginia Cancer Center in Charlottesville, and under the direction of Thomas P. Loughran, Jr, MD, this program provides extensive information and resources related to LGL Leukemia, including a patient registry.
- New patients may be eligible for the LGL Travel Fund Financial Assistance Program to help with travel-related expenses.
MPN Education FoundationContact: Website only
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.
National Cancer Institute's Cancer Information ServiceContact: 800-422-6237
Population served: Cancer patients, caregivers, family, friends, healthcare providers, researchers
Other language(s): SpanishMission:
To provide accurate, up-to-date, and reliable information on cancer that is easy to understand; this free service is a federally funded cancer education program.
- Offers trained information specialists who can answer cancer-related questions on a range of cancer topics (but is not a substitute for medical advice).
National Organization for Rare Disorders, Inc. (NORD)Contact: 203-744-0100 or 800-999-6673
Population served: Patients in the U.S. with rare diseases
NORD is leading the fight to improve the lives of rare disease patients and families. We do this by supporting the rare community – its people and organizations – and by working together to accelerate research, raise awareness, provide direct assistance and drive public policy.
- Administers Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford
- The Patient Information Center provides information on thousands of rare disorders and resources
- The Rare Caregiver Respite Program offers limited financial assistance to eligible caregivers so that they can take a break from caregiver responsibilities
- Hosts regional and national meetings for patients and families
- Works collaboratively with a growing roster of member organizations.
Patient PowerContact: email@example.com
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.
T-Cell Leukemia Lymphoma FoundationContact: 206-661-2253
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.
The Eye Cancer Foundation – Eye Cancer NetworkContact: 212-832-8170
Population served: Eye cancer patients and their families, health professionals worldwide
To create a world-class center of excellence for patients and their families diagnosed with ocular tumors, macular degeneration, and related ophthalmic conditions.
- Provides Find A Doctor search tool to locate an eye cancer specialist
- Offers an online support community through Facebook
- Funds research to find cures for patients with ocular tumors and related eye diseases
- Provides eye cancer specialists for unserved and underserved countries.