American Brain Tumor Association (ABTA)Contact: 800-886-2282
Population served: Brain tumor patients and their families in the United States
Other language(s): SpanishMission:
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)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”
Cutaneous Lymphoma FoundationContact: 248-644-9014
Population served: Anyone seeking information on cutaneous lymphoma (CL)
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.
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.
International Waldenstrom's Macroglobulinemia Foundation (IWMF)Contact: 941-927-4963
Population served: People diagnosed with Waldenstrom’s macroglobulinemia and their loved ones, healthcare providers, worldwide
Other language(s): Spanish, French, Italian, Chinese, Deutsch, and Norwegian Mission:
To support and educate everyone affected by Waldenstrom's macroglobulinemia (WM) while advancing the search for a cure
- Provides authoritative disease/treatment information, resources and supports to patients, caregivers and providers; works to increase awareness about WM worldwide; invests in WM research projects throughout the world.
Lymphoma Foundation of AmericaContact: 734-222-1100
Population served: Lymphoma patients, caregivers, healthcare professionals
To help lymphoma patients and families, and to fund research for a cure.
- Registered nurses provide medical information and resources
- Provides online list of lymphoma specialists in the US
- Online survivor stories and lists of recommended books
- Funds research grants and awards to scientists at leading universities and cancer centers.
Lymphoma Research Foundation (LRF)Contact: 800-500-9976
Population served: Patients with lymphoma and their families, caregivers, health professionals
Other language(s): Spanish, other languages available by phoneMission:
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.
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: firstname.lastname@example.org
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.