Organizations
Multiple Myeloma Research Foundation (MMRF) www.themmrf.org; 1-866-603-MMCT Founded in 1998, the MMRF is a nonprofit organization that provides facts, information, and resources about multiple myeloma diagnosis and treatment. The MMRF invests in research and tracks patient recovery in the hopes of discovering a cure. International Myeloma Foundation (IMF) www.myeloma.org; 800-452-2873 The goal of IMF is to improve the quality of life of myeloma patients while working toward prevention and a cure through research, education, support, and advocacy. American Cancer Society (ACS) www.cancer.org; 800-227-2345 The American Cancer Society provides information related to the latest in statistics, causes, risk factors, symptoms, diagnosis, and treatment for multiple myeloma. National Organization for Rare Disorders (NORD) www.rarediseases.org; 203-744-0100 Learn more about signs and symptoms, causes, affected populations, related disorders, standard treatments, therapies, and supporting resources here. National Institutes of Health (NIH) www.rarediseases.info.nih.gov; 888-205-2311 The NIH’s Genetic and Rare Diseases Information Center offers a detailed overview of symptoms, causes, treatment, diagnosis, and prognosis, as well as information on organizations and the latest research on multiple myeloma. They also offer tips on how to find a specialist so you can get the help that you need. Myeloma Central www.myelomacentral.com Get a free Welcome Kit with treatment calendars, receive frequent emails with updates on research and treatment, and find a wealth of articles and information related to multiple myeloma. RELATED: Have You Been Screened for Lung Cancer? Cancer Care provides financial and copay assistance, as well as the option of having a professional oncology social worker find you additional resources. They also have an online database that helps you find doctors and other forms of assistance. Multiple Myeloma Research Foundation (MMRF) www.themmrf.org; 866-603-MMCT The MMRF has compiled a list of support groups and financial programs to help you find the assistance you need for multiple myeloma. The programs range from those that cover some of the costs of medication, treatments, and copays to those that provide education about insurance coverage. PAN Foundation www.panfoundation.org; 866-316-7263. Patient Access Network (PAN) Foundation is a nonprofit organization that seeks to help federally and commercially insured people with chronic or life-threatening diseases like multiple myeloma with some costs of their prescription medication. Healthwell Foundation www.healthwellfoundation.org; 800-675-8416. The Healthwell Foundation provides financial assistance to eligible individuals for coinsurance, copays, healthcare premiums, and deductibles for certain medication and therapies. NeedyMeds www.needymeds.org; 800-503-6987 NeedyMeds is resource for those who can’t afford medication or other healthcare expenses. You can find assistance for specific diseases and conditions, application assistance, state-sponsored programs, and Medicaid sites. RELATED: Everyday Health’s Cancer Disparities Twitter Chat: Here’s What You Missed
Coping, Advocacy, and Support
International Myeloma Foundation (IMF) www.myeloma.org Choose from 150 myeloma support groups in the United States. You can search by your ZIP code to find a group in your area and connect with other myeloma survivors and caregivers. Multiple Myeloma Research Foundation www.themmrf.org; 866-603-MMCT Scroll through a directory to find a multiple myeloma support group near you. Cancer Care www.cancercare.org; 800-813-HOPE, ext. 4673 Cancer Care offers free online, telephone, and face-to-face services for those with multiple myeloma and other cancers. Their services range from individual counseling to support in groups. MyLifeLine www.mylifeline.org; 888-793-9355. MyLifeLine provides a list of support groups, as well as other resources, like a caregiver toolkit, financial assistance, side effect management tips, and a cancer resources directory. American Cancer Society (ACS) www.cancer.org The ACS will connect you with free or low-cost local support groups in your area. RELATED: Sugary Drinks Are Linked to Greater Risk of Early-Onset Colorectal Cancer
Facts and Statistics
Leukemia & Lymphoma Society lls.org American Cancer Society cancer.org National Institute of Health cancer.gov
Medication and Therapies
According to the National Cancer Institute, the following drugs have been approved by the FDA to treat multiple myeloma:
Alkeran, Evomela (melphalan)Aredia (pamidronate disodium)BiCNU (carmustine)CyclophosphamideDarzalex (daratumumab)Doxil, Evacet, LipoDox (doxorubicin liposome)Empliciti (elotuzumab)Farydak (panobinostat)Kyprolis (carfilzomib)Mozobil (plerixafor)Ninlaro (ixazomib citrate)Pomalyst (pomalidomide)Revlimid (lenalidomide)Thalomid (thalidomide)Velcade (bortezomib)Zometa (zoledronic acid)
Patient and Community Blogs
Patient Power www.patientpower.com Yolanda Brunson-Sarrabo, author of Another Face of Multiple Myeloma gives her experience of the first moments of being diagnosed with multiple myeloma. Blog for a Cure www.blogforacure.com A compilation of 29 blogs of personal patient stories and journeys of having multiple myeloma. Navigating Care www.navigatingcare.com Here you’ll find 10 multiple myeloma blogs written by patients. Myeloma Beacon www.myelomabeacon.org A column devoted to patients sharing their experiences with multiple myeloma. Find comfort in support in the journey of others with weekly blog posts. RELATED: Cancer Experts Express Concern About How COVID-19 Is Impacting People With Cancer
Clinical Trials
Multiple Myeloma Research Foundation www.themmrf.org; 866-603-MMCT Search for clinical trials based on keywords, find information about treatment options, and learn about clinical trials. NIH ClinicalTrials.gov www.clinicaltrials.gov ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. Explore 285,128 research studies in all 50 states and in 203 countries.
