Interest & Advocacy

Interest and Advocacy Groups

The International Myeloma Foundation (IMF):
The International Myeloma Foundation is the oldest USA based Myeloma only advocacy group. The IMF focuses on research, education, support and advocacy related to the disease and runs training programs for local support group leaders.

Multiple Myeloma Research Foundation (MMRF):
One of The USA’s two large Myeloma Foundations. The MMRF focuses on using “business models rather than academic models of drug development”.

Leukemia & Lymphoma Society (LLS) – Multiple Myeloma Page:  The LLS was the first and still is one of the most important organizations providing printed information and phone & online support personnel for Myeloma patients. The LLS offers Financial Aid and Medical Co-pay Assistance Programs for those in need.

Myeloma UK:  The leading resource for Myeloma information in the UK.  The website has a wonderful multimedia section including a very short video which explains how you get your first Myeloma cell, the one which every other came from: The Origin of the Myeloma Cell

MyelomaCrowd Crowdcare Foundation:  What started as a fundraising project to provide money for high risk Myeloma research has become become a multi-featured advocacy organization.  Still focused primarily on research, the website has an impressive podcast library of interviews with upcoming and leading researchers.

Online-line Support Communities

Smart Patients:  Started as an IMF listserv in the DOS era of computing and crew into what is probably the largest online community of Myeloma patients and caregivers.  Very active with little moderation so buyer beware.

Patients Like Me:  Another large community online site.  Created a few years ago, it is very strong on data breakout from questions asked and frequent questionnaires sent to members emails which it’s developers hope to use to support or even guide research.

FaceBook (Myeloma search page):  Unsurprisingly there a are a number of Facebook Myeloma sites.  The three largest are Multiple Myeloma (7,371 members), Multiple Myeloma Support Group (4,605 members), and General Multiple Myeloma Group (3,700 members).  All of them are “closed” groups which means you must request admission from the administrator.  Your response usually arrives within 24 hours and will almost certainly be positive.

News Sources:

The Myeloma Beacon:  A well established Myeloma online only news and opinion magazine.  Full featured and well respected, Pat Killingsworth used to be among its columnists.

Cure (Myeloma search page):  Cure is a cancer website which presents itself as an online magizine.  It has a very strong Myeloma section though it is probably better used through its search function.

American Society of Hematology:  The website of ASH.  Often has the latest news, directly from the researchers themselves, before it is officially presented to the public.

MedCom Oncology -Managing Myeloma:  The site is really for professionals as many videos are available for continuing medical education (CME) credit.  One section has a series of videos which describe case studies and then challenge the viewer to choose which is the best of four therapies to prescribe to the patient.  You have to subscribe to the site to have access to all of its features.

Journal of the American Medical Association: Oncology  The oncology section of website the Journals of the American Medical Association (JAMA). Surprisingly readable for a professional publication. A great source for news, research and opinion.

STAT Geared toward the general public, STAT focuses on all aspects of our health and medical system including sections on Health, Pharma, Biotech, Politics, “In the Lab”, Opinion, and Watchdogs.

News Aggregators:

ScienceDaily (Myeloma search page): This a website which covers all of science but still has a great, constantly updated, Myeloma section.  To drill down to what you want to know its best to use its search function.

Medical Express:  This a website which covers all of medical science which is constantly updated.  To drill down to what you want to know its best to use its search function.

Medcom Oncology:  Just Good Myeloma stuff.

Medical Center Myeloma Websites:

Mayo Clinic:  A very complete section to understand the disease.  Informative, easy to read, and nearly free of any self promotion.

UAMS -University of Arkansas Myeloma Institute Learning Center:  A lot of good information on Myeloma and related diseases but marred by obvious self promotion.

Memorial Sloan-Kettering Cancer Center:  A nice Multiple Myeloma section.  Very informative, easy to use, and readable.

Mount Sini Medical Center:   Another clean, easy to read, and informative website from a leading cancer hospital.  Of interest, in part, because this is where Bart Barlogie ended up after he left UAMS.

Dana Farber Cancer Institute:  Has one of the biggest Myeloma centers in the country and historically has received the lion’s share of MMRF funding dollars.  Unfortunately their website is little more than an advertisement.

MD Anderson:  Another internationally recognized cancer center (has traded the USNews best cancer center award with Mayo for the past 10+ years) with a leading Myeloma program.  Good website but Mayo wins this award hands down.

US Government Agencies

NIH National Cancer Institute: A must read with a wealth of information.  Do you like statistics?  They do.

PubMed: Part of the US National Library of Medicine National Institutes of Health (NCBI), it is a continuously updated library and archive of research papers in every part of the medical field.  A good way to find what you doctors have published in the past and to read firsthand what you may have read about somewhere else.

Trials (Myeloma search): From the US National Library of Medicine, it is a list of all the studies in the US including description, drugs, study locations,and  lead researchers .  Under Myeloma there are 2,993 current studies.