Organizations That Offer Services to People With Mesothelioma
ALCASE offers programs designed to help improve the quality of life
of people with lung cancer and their families. Programs include education
about the disease, psychosocial support, and advocacy about issues that
concern lung cancer survivors.
The ABTA funds brain tumor research and provides information to help patients make educated decisions about their health care. The ABTA offers printed materials about the research and treatment of brain tumors, and provides listings of physicians, treatment facilities, and support groups throughout the country. A limited selection of Spanish-language publications is available.
The ACS is a voluntary organization that offers a variety of services to patients and their families. The ACS also supports research, provides printed materials, and conducts educational programs. Staff can accept calls and distribute publications in Spanish. A local ACS unit may be listed in the white pages of the telephone directory under "American Cancer Society."
American Cancer Society (ACS) Supported Programs:
The AFUD supports research; provides education to patients, the general public, and health professionals; and offers patient support services for those who have or may be at risk for a urologic disease or disorder. They provide information on urologic disease and dysfunctions, including prostate cancer treatment options, bladder health, and sexual function. They also offer prostate cancer support groups (Prostate Cancer Network). Some Spanish-language publications are available.
The AICR provides information about cancer prevention, particularly through diet and nutrition. They offer a toll-free nutrition hotline and funding of research grants. The AICR also has a wide array of consumer and health professional brochures, plus health aids about diet and nutrition and their link to cancer and cancer prevention. The AICR also offers the AICR CancerResource, an information and resource program for cancer patients. A limited selection of Spanish-language publications is available.
The Brain Tumor Society provides information about brain tumors and related conditions for patients and their families. They offer a patient/family telephone network, educational publications, funding for research projects, and access to support groups for patients.
Cancer Care is a national nonprofit agency that offers free support, information, financial assistance, and practical help to people with cancer and their loved ones. Services are provided by oncology social workers and are available in person, over the telephone, and through the agency's Web site. Cancer Care's reach also extends to professionals-providing education, information, and assistance. A section of the Cancer Care Web site and some publications are available in Spanish, and staff can respond to calls and e-mails in Spanish.
The Cancer Hope Network provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience. Such matches are based on the type and stage of cancer, treatments used, side effects experienced, and other factors.
The Cancer Research Foundation of America seeks to prevent cancer by funding research and providing educational materials on early detection and nutrition.
The CCCF is a nonprofit organization that provides information, peer support, and advocacy through publications, an information clearinghouse, and a network of local support groups. A financial aid list is available that lists organizations to which eligible families may apply for assistance.
CaP CURE is a nonprofit organization that provides funding for research projects to improve methods of diagnosing and treating prostate cancer. It also offers printed resources for prostate cancer survivors and their families. The mission of CaP CURE is to find a cure for prostate cancer.
Children's Hospice International provides a network of support for dying children and their families. It serves as a clearinghouse for research programs and support groups, and offers educational materials and training programs on pain management and the care of seriously ill children.
The CCA is an organization of colon and rectal cancer survivors, their families, caregivers, and the medical community. The Alliance provides patient support and public education, supports research, and advocates for the needs of cancer patients and their families. The CCA offers information including brochures and booklets, a newsletter, a toll-free Helpline, and weekly online chats. It also offers the CCA Buddies Network, which matches survivors and caregivers with others in a similar situation for one-on-one emotional support. The CCA has volunteers who speak Spanish.
The Colorectal Cancer Network is a national advocacy group that raises public awareness about colorectal cancer and provides support services to colorectal cancer patients and their families, friends, and caregivers. Services include support groups; an Internet chat room; e-mail listservs for survivors, caregivers, and advocates; hospital visitation programs; and a "One on One" service that connects newly diagnosed individuals with long-term survivors. The Network also provides literature on screening, diagnosis, treatment, and supportive care for colorectal cancer.
Gilda's Club Worldwide works with communities to start and maintain local Gilda's Clubs, which provide social and emotional support to cancer patients, their families, and friends. Lectures, workshops, support and networking groups, special events, and children's programs are offered. Services are available in Spanish.
HOSPICELINK helps patients and their families find support services in their communities. They offer information about hospice and palliative care and can refer cancer patients and their families to local hospice and palliative care programs.
International Myeloma Foundation (IMF)
The IMF supports education, treatment, and research for multiple myeloma. They provide a toll-free hotline, seminars, and educational materials for patients and their families. Although the IMF does not sponsor support groups, they do keep a list of other organizations' support groups and provide information on how to start a support group. A section of the IMF Web site and some printed materials are available in Spanish.
The IWMF provides encouragement and support to people with Waldenstrom's Macroglobulinemia (WM) and their families, and works to increase awareness of issues related to WM. The IWMF also encourages and supports increased research toward finding more effective treatments and ultimately a cure. The IWMF offers publications, including a quarterly newsletter, The IWMF Torch, and bulletins. Through its Internet Talklist, regional support groups, and telephone Lifeline Project, the Foundation also helps people with WM contact others with this disease. People may also participate in the IWMF's annual Educational Forum to hear prominent researchers and other speakers, and to share their experiences with other participants.
The Kidney Cancer Association supports research, offers printed materials about the diagnosis and treatment of kidney cancer, sponsors support groups, and provides physician referral information.
The LAF, a nonprofit organization founded by cancer survivor and cyclist Lance Armstrong, provides resources and support services to people diagnosed with cancer and their families. The LAF's services include Cycle of Hope, a national cancer education campaign for people with cancer and those at risk for developing the disease, and the Cancer Profiler, a free interactive treatment decision support tool. The LAF also provides scientific and research grants for the better understanding of cancer and cancer survivorship.
The goal of The Leukemia and Lymphoma Society is to find cures for leukemia, lymphoma, Hodgkin's disease, and multiple myeloma and to improve the quality of life of patients and their families. The Society supports medical research and provides health education materials, as well as the following services: patient financial aid for specified treatment expenses and transportation, family support groups, First Connection (a professionally supervised peer support program), referrals, school re-entry materials, and public and professional education. The Society also provides audiotapes in English and some Spanish-language publications.
In 2001, the Lymphoma Research Foundation of America (LRFA) and the Cure For Lymphoma Foundation (CFL) merged to become the Lymphoma Research Foundation (LRF). The LRF's mission is to eradicate lymphoma and serve those touched by this disease. The LRF funds research, advocates for lymphoma-related legislation, and provides educational and support programs for patients and their families.
The MMRF supports research grants and professional and patient symposia on multiple myeloma and related blood cancers. The MMRF publishes a quarterly newsletter, and provides referrals and information packets free of charge to patients and family members.
NABCO is a nonprofit organization that provides information about breast cancer and acts as an advocate for the legislative concerns of breast cancer patients and survivors. NABCO maintains a list, organized by state, of phone numbers for support groups.
The NAWHO is working to improve the health status of Asian women and families through research, education, leadership, and public policy programs. They have resources for Asian women in English, Cantonese, Laotian, Vietnamese, and Korean. Publications on subjects such as reproductive rights, breast and cervical cancer, and tobacco control are available.
The nbmtLink motto is "A second chance at life is our first priority." The nbmtLink operates a 24-hour, toll-free number and provides peer support to bone marrow transplant (BMT) patients and their families. It serves as an information center for prospective BMT patients as well as a resource for health professionals. Educational publications, brochures, and videos are available. Staff can respond to calls in Spanish.
The NBTF provides patients and their families with information on how to cope with their brain tumors. This organization conducts national and regional conferences, publishes printed materials for patients and family members, provides access to a national network of patient support groups, and assists in answering patient inquiries. The NBTF also awards grants to fund research. Staff are available to answer calls in Spanish, and some Spanish-language publications are available.
The NCCF supports research conducted by a network of institutions, each of which has a team of doctors, scientists, and other specialists with the special skills required for the diagnosis, treatment, supportive care, and research on the cancers of infants, children, and young adults. Advocating for children with cancer and the centers that treat them is also a focus of the NCCF. A limited selection of Spanish-language publications is available.
The NCCS is a network of groups and individuals that offer support to cancer survivors and their loved ones. It provides information and resources on cancer support, advocacy, and quality of life issues. A section of the NCCS Web site and a limited selection of publications are available in Spanish.
The NHPCO is an association of programs that provide hospice and palliative care. It is designed to increase awareness about hospice services and to champion the rights and issues of terminally ill patients and their family members. They offer discussion groups, publications, information about how to find a hospice, and information about the financial aspects of hospice. Some Spanish-language publications are available, and staff are able to answer calls in Spanish.
The NLN provides education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. They provide a toll free support hotline, a referral service to lymphedema treatment centers and health care professionals, a quarterly newsletter with information about medical and scientific developments, support groups, pen pals, educational courses for health care professionals and patients, and a computer database. Some Spanish-language materials are available.
The National Marrow Donor Program (NMDP), which is funded by the Federal Government, was created to improve the effectiveness of the search for bone marrow donors. It keeps a registry of potential bone marrow donors and provides free information on bone marrow transplantation, peripheral blood stem cell transplant, and unrelated donor stem cell transplant, including the use of umbilical cord blood. The NMDP's Office of Patient Advocacy assists transplant patients and their physicians through the donor search and transplant process by providing information, referrals, support, and advocacy.
The NOCC raises awareness about ovarian cancer and promotes education about this disease. They have a toll-free telephone number for information, referral, support, and education about ovarian cancer. They also offer support groups, a database of gynecologic oncologists searchable by state, and educational materials. A limited selection of Spanish-language publications is available.
The NPTC provides the National Patient Travel Helpline, a telephone service which facilitates patient access to charitable medical air transportation resources in the United States. The NPTC also offers information about discounted airline ticket programs for patients and patient escorts, operates Special-Lift and Child-Lift programs, and brings ambulatory outpatients to the United States from many overseas locations.
The Alliance works to increase public and professional understanding of ovarian cancer and to advocate for research to determine more effective ways to diagnose, treat, and cure this disease. The Alliance distributes informational materials; sponsors an annual advocacy conference for survivors and families; advocates on the issues of cancer to the ovarian cancer community; and works with women's groups, seniors, and health professionals to increase awareness of ovarian cancer.
PanCAN, a nonprofit advocacy organization, educates health professionals and the general public about pancreatic cancer to increase awareness of the disease. PanCAN also advocates for increased funding of pancreatic cancer research and promotes access to and awareness of the latest medical advances, support networks, clinical trials, and reimbursement for care.
The PAF provides education, legal counseling, and referrals to cancer patients and survivors concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters.
The R. A. Bloch Cancer Foundation matches newly diagnosed cancer patients with trained, home-based volunteers who have been treated for the same type of cancer. They also distribute informational materials, including a multidisciplinary list of institutions that offer second opinions. Information is available in Spanish.
Sisters Network seeks to increase local and national attention to the impact that breast cancer has in the African American community. All chapters are run by breast cancer survivors and receive volunteer assistance from community leaders and associate members. The services provided by Sisters Network include individual/group support, community education, advocacy, and research. The national headquarters serves as a resource and referral base for survivors, clinical trials, and private/government agencies. Teleconferences are held to update chapters with the latest information and share new ideas. An educational brochure designed for underserved women is available. In addition, a national African American breast cancer survivors newsletter is distributed to survivors, medical facilities, government agencies, organizations, and churches nationwide.
Major goals of The Skin Cancer Foundation are to increase public awareness of the importance of taking protective measures against the damaging rays of the sun and to teach people how to recognize the early signs of skin cancer. They conduct public and medical education programs to help reduce skin cancer.
The STARBRIGHT Foundation creates projects that are designed to help seriously ill children and adolescents cope with the psychosocial and medical challenges they face. The STARBRIGHT Foundation produces materials such as interactive educational CD-ROMs and videos about medical conditions and procedures, advice on talking with a health professional, and other issues related to children and adolescents who have serious medical conditions. All materials are available to children, adolescents, and their families free of charge. Staff can respond to calls in Spanish.
The SPOHNC is a self-help organization that serves oral and head and neck cancer patients, survivors, and their families. The organization offers support group meetings, information, newsletters, and teleconferences. The SPOHNC also offers a "Survivor to Survivor" network which pairs survivors or their family members with volunteers who have had a similar diagnosis and treatment program.
The Susan G. Komen Breast Cancer Foundation's mission is to eradicate breast cancer as a life-threatening disease by advancing research, education, screening, and treatment. This organization operates a national toll-free breast cancer helpline (1-800-I'M AWARE®) that is answered by trained volunteers whose lives have been personally touched by breast cancer. Breast health and breast cancer materials, including pamphlets, brochures, booklets, posters, videos, CD-ROMs, fact sheets, and community outreach materials are available. Staff can respond to calls in Spanish, and some publications are available in Spanish.
ThyCa offers a network of services to thyroid cancer survivors, caregivers, family members, and friends. These services include e-mail support groups, person-to-person support, local support groups, and a toll-free survivors' telephone line. ThyCa also offers a low-iodine cookbook, newsletters, conferences, and workshops. The organization has volunteers who are fluent in Spanish.
The United Ostomy Association helps ostomy patients through mutual aid and emotional support. It provides information to patients and the public and sends volunteers to visit with new ostomy patients.
US TOO is a prostate cancer support group organization. Goals of US TOO are to increase awareness of prostate cancer in the community, educate men newly diagnosed with prostate cancer, offer support groups, and provide the latest information about treatment for this disease. A limited selection of Spanish-language publications is available.
The mission of Vital Options is to use communications technology to reach people dealing with cancer. This organization holds a weekly syndicated call-in cancer radio talk show called "The Group Room®," which provides a forum for patients, long-term survivors, family members, physicians, and therapists to discuss cancer issues. Listeners can participate in the show during its broadcast every Sunday from 4 p.m. to 6 p.m. Eastern time by calling the toll-free telephone number. A live Web simulcast of "The Group Room" can be heard by logging onto the Vital Options Web site.
The Wellness Community provides free psychological and emotional support to cancer patients and their families. They offer support groups facilitated by licensed therapists, stress reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events.
The Y-ME National Breast Cancer Organization provides information and support to anyone who has been touched by breast cancer. Y-ME serves women with breast cancer and their families through their national hotline (available 24 hours a day), open-door groups, early detection workshops, and support programs. Numerous local chapter offices are located throughout the United States. A section of the Y-ME Web site, a toll-free hotline, and publications are available in Spanish.