Paroxysmal Nocturnal Hemoglobinuria (PNH)
Policymakers Act on Rare Disease Community’s Behalf
When the federal government is handing out money, it’s all too common for rare diseases to be overlooked since, by definition, they affect far fewer people. But December was a good month for our community. The U.S.
Clinical Trials Report for January 2016
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.
South River Hope, Steps & A Cure: June 7, 2015
Notable Numbers
- 130+ Walkers and Runners
Clinical Trials Report for December 2015
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.
Clinical Trials Report for November 2015
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.
2016 Health Insurance Enrollment Begins November 1st
Open enrollment for health insurance begins again on November 1st 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:
“Mom, it’s too late. I’m dying.”
My husband Rick and I knew Jake was not feeling well. He kept denying it and saying he was fine. A bloody nose scared me, and then I remembered how my brother-in-law had them as a child and thought it was hereditary. Then his high school said he had another. He began to ask us if he looked pale. We said that he did. He also was coughing and seemed lethargic. We encouraged him to go to the doctor, but he said he was fine.
Clinical Trials Report for October 2015
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.
How to Find a Research Article
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