Online Information Resources

To provide you with as many resources about myeloma as possible, we have compiled links to sites that cover a wide range of topics—from side effects to funding resources. To find psycho-social support in your area, visit Counseling and Support Resources. If you live outside the US, you will find international resources, and to make travel easier for you, links are provided specifically for travel needs of patients. 

Drug Reimbursement Information and Assistance

Amgen Assist 360Help with covering the costs of Amgen medicines, including KYPROLIS® (carfilzomib).

CancerCare Co-Payment Assistance FoundationHelp for individuals who cannot afford insurance co-pays for medications to treat cancer.

Celgene Patient Support®Help with navigating the challenges of reimbursement, co-pay assistance, and questions about obtaining Celgene products REVLIMID® (lenalidomide), POMALYST® (pomalidomide), and THALOMID® (thalidomide).

Center for Medicare and Medicaid ServicesInformation on all Medicare and Medicaid services and programs, including The Affordable Care Act. It is illegal for a plan to deny coverage because a person is sick. Lower costs for prescription drugs in the "donut hole."

COPAYSCo-pay assistance for pharmaceutical products to qualified insured patients, including Medicare Part D beneficiaries.

DARZALEX®Reimbursement support, insurance coverage verification, and product-specific claims and appeals for DARZALEX®(daratumumab). Referrals to independent foundations that may have available funding to help minimize drug costs.

DOXIL®Reimbursement support, insurance coverage verification, and product-specific claims and appeals for DOXIL®(doxorubicin HCl liposome injection). Referrals to independent foundations that may have available funding to help minimize drug costs.

EMPLICITI®Assistance with co-payment or co-insurance requirements for eligible, commercially insured patients who have been prescribed Bristol-Myers Squibb oncology products, including EMPLICITI® (elotuzumab).

FARYDAK®Co-pay support for FARYDAK® (panobinistat) by Novartis Oncology.

Good DaysFinancial Support for patients in need. Mission is to ensure no one has to choose between getting the medication they need and affording the necessities of everyday living.

Health Insurance Resource CenterInformation on risk pools for the medically uninsurable, with a listing by state and how to contact them.

HealthWell FoundationFinancial assistance for eligible individuals to cover co-insurance, co-payments, healthcare premiums and deductibles for certain medications and therapies.

Leukemia and Lymphoma Society Co-Pay Assistance ProgramHelps pay insurance premiums and meet co-pay obligations, plus helps find additional sources of financial help.

NeedyMedsInformation on programs that help people facing problems paying for medications and healthcare, and assistance with applying to programs.

NINLARO®Assistance with costs and other day-to-day needs associated with NINLARO® (ixazomib) treatment.

Partnership for Prescription AssistanceHelps qualifying patients without prescription drug coverage get the medicines they need.

Patient Access Network FoundationProvides assistance to underinsured patients for their out-of-pocket expenses for life-saving medications.

PROCRIT®Reimbursement support, insurance coverage verification, and product-specific claims and appeals for PROCRIT®(epoetin alfa). Referrals to independent foundations that may have available funding to help minimize drug costs.

Rx AssistA database of patient assistance programs run by pharmaceutical companies, as well as practical tools, news, and articles.

The Safety Net FoundationHelps qualifying uninsured patients access Amgen medicines at no cost.

VELCADE®Millennium's program for patients, physicians, and caregivers to provide reimbursement assistance related to the use of VELCADE® (bortezomib).

Housing and Travel Assistance

Air Charity Network™ (formerly Angel Flight America)

A charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.

Charitable Lodging in Rochester, Minnesota

Rochester, Minnesota provides a home away from home for clinic visitors and their families seeking medical care with the support they need.

Corporate Angels Network - Free Air Travel For Cancer Patients

The only charitable organization in the United States whose sole mission is to help cancer patients access the best possible treatment for their specific type of cancer by arranging free travel to treatment across the country using empty seats on corporate jets. 

Joe's House

A housing resource for cancer patients and their families who must travel away from home for medical treatment.

Lifeline Pilots - free air travel for patients

Their mission is to provide people in medical and financial distress with access to free air transportation on small (4-6 seat), private aircraft for distant health care and other compelling human needs.

National Patient Travel Center

Provider of information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.

PALS - Patient AirLift Services

Free air transportation based on need using a network of volunteer 

Pain Management

Cancer Pain

Learn more about cancer-related pain and how it can be managed and treated. Cancer.org is provided courtesy of the Leo and Gloria Rosen family.

Controlling Cancer Pain - CancerCare (PDF)

A downloadable PDF written to help people with cancer learn about pain control. 

Cancer Care

We provide telephone, online and face-to-face counseling, support groups, education, publications, and financial and co-payment assistance. Professional oncology social workers offer personalized care, and all of our services are free of charge.

Anesthesiology Pain Management 

Memorial Sloan Kettering Cancer Center

This program in pain management is jointly coordinated with New York Special Surgery, Memorial Sloan Kettering Cancer Center, or New York-Presbyterian ..

The Specialty Of Chronic Pain Management 

This site explains the role of a  pain management specialists, who are physicians with special training in acute pain, chronic pain, and cancer pain and sometimes a combination of these. It describes how these professionals can help patients.

Pain (PDQ®) - National Cancer Institute

General information about cancer pain

Legal

Cancer and Careers

Cancer and Careers is dedicated to empowering and educating people with cancer to thrive in their workplace by providing expert advice, interactive tools and educational events.

Cancer Legal Resource Center (CLRC)

The CLRC is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. It provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.

Patient Advocate Foundation

Patient Advocate Foundation provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

American Society of Law, Medicine & Ethics

A nonprofit educational organization. Our mission is to provide high-quality scholarship, debate, and critical thought for professionals at the intersection of law, medicine, and ethics.

Counseling and Support

Association of Oncology Social Work – Tips for Managing Cancer and Caregiving

This site covers how to cope with the emotional impact of managing cancer care.

Cancer Hope Network

Free and confidential one-on-one support to cancer patients and their families. As our core offering, we match cancer patients or family members with trained volunteers who have undergone and recovered from a similar cancer experience.

Cancer Support Community

July 2009, The Wellness Community and Gilda’s Club Worldwide joined forces to become the Cancer Support Community. Services include support groups, counseling, education and healthy lifestyle programs. Today, CSC provides emotional and social support through a network of more than 50 local affiliates, 100 satellite locations and online.

Cancer.net

Psychosocial issues of cancer from the American Society of Clinical Oncology (ASCO)

CANCERcare

Their staff of professional oncology social workers provide support, information, and resources to help you better cope with cancer.

Transplant

 

American Cancer Society: Information page on stem cell transplants for cancer treatment. 

ASBMT: Helps patients and their loved ones better understand blood and marrow transplantation, and provides links to patient-focused marrow transplantation organizations.

ASBMR: A resource for scientists and clinicians that highlights the latest basic, clinical and translational research in bone and mineral metabolism.

BloodLine: A reference site by the American Society of Hematology (ASH).

BMT InfoNet: Provides emotional support and information about bone marrow and peripheral blood stem cell transplants to patients and their loved ones with.

Bone Marrow Foundation: The Lifeline Fund helps to cover the myriad costs associated with transplants, such as donor searches, compatibility testing, bone marrow harvesting, medications, medical equipment, transportation, etc.

Blood and Marrow Transplant Clinical Trials Network: Established to conduct large multi-institutional clinical trials in hematopoietic stem cell transplantation. Participating investigators collaborate to offer trials participation to patients in all regions of the US.

Cancer.net: Information about stem cell transplants provided by the American Society of Clinical Oncology (ASCO). 

CIBMTR: Information for patients and their families ranges from data about transplant outcomes to best practices in follow-up care for patients post-transplant.

HRSA: Information about bone marrow or cord blood transplant process for patients, their families, and health care providers.

National BMT Link: Information, referrals, and support by trained peer volunteers who are transplant survivors, caregivers, and donors. Education for patients coping with chronic graft-versus-host disease.

 

International Organizations

North America

Canadian Cancer Society

A Canadian national, community-based organization of volunteers whose mission is the eradication of cancer and the enhancement of the quality of life of people living with cancer.

Myeloma Canada

Myeloma Canada was created in 2004 by and for people living with multiple myeloma to provide educational resources and emotional support to patients, families and caregivers; to increase awareness of the disease and its effects on the lives of patients and families; to promote clinical research and access to new drug trials in Canada; and to facilitate access to new therapies, treatment options, and health care resources. Information available in French and English.

Lymphoma Foundation of Canada

Lymphoma Canada provides, at no cost and in both official languages:  electronic and print materials on the Hodgkin lymphoma, non-Hodgkin lymphoma and CLL, peer and caregiver support groups, educational forums and advocacy on behalf of patients. Lymphoma Canada also funds Canadian research.

Long-Term Care Planning Network (Canada)

Canadian resource for those who need information on aging, caregiving, or long-term care planning.

 

South America

IMF Latin America

Sociedad Argentina de Hemotologia

 

Europe

Bloodwise

A UK-based organization that funds world-class research and offer expert information and support to anyone affected by leukaemia, lymphoma, myeloma, and other blood cancer related disorders.

European Cancer Patient Coalition (ECPC)

Launched in 2003 to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.

German Speaking Myeloma Support Group

Myeloma Euronet - European Network of Myeloma Patient Groups

Myeloma UK

The only organization in the UK focused on myeloma, with the mission to help myeloma patients live longer and with a better quality of life.

National Institute For Cancer Research (Genoa, Italy)

This UK-based forum aims to improve the care of patients with myeloma through the development and promotion of trials and provides education about myeloma to healthcare professionals and patients.

 

Middle East

AMEN - The Israeli Association of Myeloma Patients

AMEN Foundation was established by Multiple Myeloma patients for the sake of MM patients in Israel and their families.

 

Asia-Pacific

National Cancer Center - Japan

 

International

International Cancer Information Service Group (ICISG)

A worldwide network of more than 50 organizations that deliver cancer information.  

The Max Foundation

The MAX Foundation is a US-based non-profit (501c-3) cancer organization with international focus. The MAX Foundation honors the spirit and life of Maximiliano (Max) Rivarola who was diagnosed with chronic myeloid leukemia (CML) at age 14 and lived with outstanding courage until 17 years of age.

Government

Center for Medicare Advocacy: A nonpartisan organization that provides education, advocacy, and legal assistance to help older people and people with disabilities obtain fair access to Medicare and necessary health care.

Centers for Medicare and Medicaid Services: This agency administers Medicare (available to Americans over 65 years old) and Medicaid (available to economically challenged individuals).

Department of Veterans Affairs: Veterans who were exposed to Agent Orange or other herbicides during military service do not have to prove a connection between their myeloma and service to be eligible to receive VA health care and disability compensation.

Federal Disability Benefits: Help with applying for disability benefits, and finding a job, health care, or accessible housing.

Food and Drug Administration: The FDA is responsible for regulating the safety of food, drugs, medical devices, vaccines, cosmetics, radiation-emitting products, and tobacco products.

Health Care Reform: Learn more about the Affordable Care Act options available to you, and how the law specifically applies to you.

Low Income Home Energy Assistance Program: LIHEAP helps keep families safe and healthy through initiatives that assist with energy costs.

Medicare Consumer Guide: An e-HEALTH overview of Medicare plans, Medigap, and Part D coverage.

Medicare: A government health insurance program, the largest in the US.

National Cancer Institute: Comprehensive cancer information from the principal US agency for cancer research.

National Institutes of Health: Information on health and NIH institutions. The NIH is the largest biomedical research agency in the world.

Social Security Disability Application: Apply online for disability benefits.

State Health Insurance Program for Seniors: SHIP is a free health benefits counseling service for Medicare beneficiaries and their families or caregivers. SHIP is an independent program funded by Federal agencies and is not affiliated with the insurance industry.

State Insurance Information: National Organization for Rare Disorders has state-by-state insurance information and resources.

Veterans Against Myeloma: IMF resources for veterans seeking information about myeloma and guidance through the process of applying for VA benefits, including disability.

 

Other Resources and Organizations

1UpOnCancer

This site is for you if you want to look cancer in the eye and not be afraid – or at least feel much less afraid. Please visit to learn about survivors and organizations doing incredible things. To learn about promising research. To read about lifestyle choices to cut your chance for recurrence or to live well if you have metastasized. Visit for “Freebies for Cancer Patients” and other resources.

American Association for Cancer Research (AACR)

The programs and services of AACR foster the exchange of knowledge and new ideas among scientists dedicated to cancer research, provide training opportunities for the next generation of cancer researchers, and increase public understanding of cancer.

American Cancer Society

The American Cancer Society (ACS) is a nationwide, community-based voluntary health organization that offers a variety of services to patients and their families. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices.

American Institute for Cancer Research

AICR funds research that explores the effects of food, nutrition, physical activity and body weight on the development, treatment and survival of cancer.

American Society for Blood and Marrow Transplantation

American Society For Bone and Mineral Research

The American Society for Bone and Mineral Research (ASBMR) is a professional, scientific and medical society established to bring together clinical and experimental scientists involved in the study of bone and mineral metabolism.

American Society of Clinical Laboratory Science

ASCLS serves as the voice of all clinical laboratory professionals, creating a vision for the advancement of the clinical laboratory practice field, and advocating the value and the role of the profession ensuring safe, effective, efficient, equitable, and patient centered health care.

American Society Of Hematology

With more than 16,000 members from nearly 100 countries, the American Society of Hematology (ASH) is the world's largest professional society serving both clinicians and scientists around the world who are working to conquer blood diseases.

Association of Cancer Online Research (ACOR)

ACOR is a unique collection of online cancer communities designed to provide timely and accurate information in a supportive environment. It is a freelifeline for everyone affected by cancer & related disorders.

CancerCare

CancerCare is a national nonprofit organization that provides free, professional support services to anyone affected by cancer. Their programs – including counseling, education, financial assistance and practical help – are provided by trained oncology social workers and are completely free of charge.

CFAC - Cancer Financial Assistance Coalition

CFAC is a coalition of organizations helping cancer patients manage their financial challenges.

eMedTV.com

The eMedTV Web site is designed to help users better understand their health and play a more active role -- together with their physician -- in planning their healthcare. As such, the content on this Web site serves only as an informational resource.

HealthTalk's Multiple Myeloma Education Network

IMF Resource Referral

A compilation of Resource Referrals prepared by the IMF team.

Imperial Cancer Research Fund (UK)

A leading UK-based chancer charity dedicated to saving lives through research.

Integrative Medicine

Memorial Sloan Kettering's Integrative Medicine Service offers a range of wellness therapies that are designed to work together with traditional medical treatments.

Journal Of The American Medical Association

An international peer-reviewed general medical journal published 48 times per year, JAMA is  the most widely circulated medical journal in the world.

Laboratory Test Information - Common Blood Tests Explained

Lotsa Helping Hands: Care for the Caregiver

They connect people through the power of community — whether you need help or you want to provide help.

Memorial Sloan Kettering Cancer Center

At Memorial Sloan Kettering, our Integrative Medicine Service offers a range of wellness therapies that are designed to work together with traditional medical treatments. These comprehensive, evidence-based complementary services can help relieve the negative physical and emotional effects of your cancer diagnosis, treatment, and recovery.  

Leukemia and Lymphoma Society

Leukemia and Lymphoma Society of Canada

LIVESTRONG: Changing the way the world fights cancer

Helping cancer survivors and their loved ones has been our goal from day one. We believe in putting the patient first, and that is why we created tools and resources to help ease the challenges of a cancer diagnosis.

Mayo Clinic

This is the website of the Mayo Clinic, a not-for-profit medical practice dedicated to the diagnosis and treatment of virtually every type of complex illness.

Meals to Heal

Home Delivery of Fresh, Nutritious Meals Designed for Cancer Patients.

MedLine Plus (NIH)

The National Institutes of Health's Web site for patients and their families and friends; it brings you information about diseases, conditions, and wellness issues in language you can understand. 

Medscape

A leading online global destination for physicians and healthcare professionals worldwide, offering the latest medical news and expert perspectives; essential point-of-care drug and disease information; and relevant professional education and CME.

Merck Manual Of Diagnosis And Therapy

First published in 1899 as a small reference book for physicians and pharmacists, The Merck Manual grew in size and scope to become one of the most widely used comprehensive medical resources for professionals and consumers.

mSMART: the risk adapted approach to management of multiple myeloma and related disorders

Their mission is to present the state of the art approach to management of plasma cells disorders including myeloma, amyloidosis, and Waldenstroms Macroglobulinemia.

National Bone Marrow Transplant Link

A 501(c)(3) nonprofit organization dedicated to serving individuals before, during, and after a bone marrow or stem cell transplant.  

National Cancer Institute CancerNet

The  central website for the National Cancer Institute (NCI), the U.S. government’s principal agency for cancer research.

National Center For Biotechnology Information

A division of the National Library of Medicine and the National Institutes of Health, with the mission of developing new information technologies to aid in the understanding of fundamental molecular and genetic processes that control health and disease.

National Center for Complementary and Alternative Medicine

Information and resources from the National Center for Complementary and Integrative Health, U.S. National Institutes of Health (NIH).

National Coalition For Cancer Survivorship

Founded by cancer survivors, the NCSS' is to advocate for quality cancer care for all people touched by cancer.  

National Organization for Rare Diseases

A 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  

Navigate Cancer Foundation

The NavigateCancer Foundation provides free, personalized cancer care navigation services to patients and family members through online consultation.

New England Journal Of Medicine

A career companion for physicians, NEJM keeps practicing physicians informed on developments that are important to their patients and keeps them connected to both clinical science and the values of being a good physician.

NIH Osteoporosis And Related Bone Diseases Resource Center

A part of the U.S. Department of Health and Human Services, this resource center provides patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases including osteoporosis, Paget’s disease of bone, and osteogenesis imperfecta. 

Oncolink - University Of Pennsylvania

This award-winning site is maintained by a group of oncology healthcare professionals who understand the need of patients, caregivers and healthcare professionals. 

Oncology Nursing Society

A profesional association of more than 39,000 members committed to promoting excellence in oncology nursing and the transformation of cancer care. 

RX List - Drug Database

An online medical resource dedicated to offering detailed and current pharmaceutical information on brand and generic drugs.

The Max Foundation

The MAX Foundation is a US-based non-profit (501c-3) cancer organization with international focus. The MAX Foundation honors the spirit and life of Maximiliano (Max) Rivarola who was diagnosed with chronic myeloid leukemia (CML) at age 14 and lived with outstanding courage until 17 years of age.

Vital Options

Radio talk show, The Group Room, uses communications technology to reach every person dealing with cancer.

Union for International Cancer Control (UICC)

With a membership base of over 950 organizations in more than 150 countries, the UICC represents the world’s major cancer societies, ministries of health, and patient groups; it includes influential policy makers, researchers, and experts in cancer prevention and control.