Myelodysplastic Syndromes (MDS)

Open enrollment for health insurance begins again on November 1^st and millions of Americans have signed up to make sure they are in the loop about important coverage deadlines, as well as newly available prices and plans in 2016. As we move into the third year of the Affordable Care Act (ACA), AA&MDSIF wants to highlight a few of the issues that patients with rare diseases should be aware of: 

You may be surprised to learn that our current understanding of MDS only began in the 1970s.  Although related studies were conducted for many decades prior, myelodysplastic syndromes (MDS) was not well known and it was further complicated by common use of the term ‘pre-leukemia’ to describe it. The relationship of MDS to similar hematologic conditions was poorly understood.

1976: In the beginning, there was FAB. 

We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH. These clinical trials (also known as research studies) were obtained from www.clinicaltrials.gov, the federal web site that presents information on clinical trials worldwide. To narrow down your search criteria, use the advanced search feature found on the home page.

The websites shown in this article are all accessible at no charge to the public. You can use any of them to get a list of articles and, usually, abstracts (summaries) of articles for free. But access to full-text articles often requires a fee.

PubMed

Telemedicine, also known as telehealth is becoming a daily medical standard practice used by healthcare professionals throughout the world. Formally defined, telemedicine is the use of telecommunications technology, by medical practitioners, to remotely evaluate, diagnose and treat patients (GlobalMed). This is made possible by the use of a variety of applications and services that include using two-way video services, email, smart phones, wireless tools, and other forms of telecommunications technology.

What Services Can Be Provided By Telemedicine?

We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH. These clinical trials (also known as research studies) were obtained from www.clinicaltrials.gov, the federal web site that presents information on clinical trials worldwide. To narrow down your search criteria, use the advanced search feature found on the home page.

This article describes some of the most common types of research articles published in medical journals. Medical journals publish many types of articles not discussed here. A comprehensive list is available from the National Library of Medicine.

Research articles can be primary or secondary. A primary research article describes the design, methods, and results of a study. A secondary research article is a review of at least two primary research articles.

Primary articles

Fear of treatment side effects is common after a diagnosis of aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marro

The Internet has made medical information more accessible than ever before.  People with serious illnesses like aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-u