Self-Advocacy Resources

	Agency for Healthcare Research and Quality (301) 427-1104 This branch of the U.S. Department of Health and Human Services offers resources, including how to be your own advocate.
	American Board of Medical Specialties (312) 436-2600 This group will tell you for free if your doctor is board certified. A doctor who is board certified has shown great expertise in a specific area of medicine.
	ClinicalTrials.gov This Web site provides up-to-date information about clinical research clinical research: A type of research that involves individual persons or a group of people. There are three types of clinical research. Patient-oriented research includes clinical trials which test how a drug, medical device, or treatment approach works in people. Epidemiology or behavioral studies look at the… that is being carried out all over the world for a wide range of diseases and conditions. It tells the purpose of each trial, who may participate, locations, and contact numbers. It also describes the clinical trial clinical trial: A type of research study that tests how a drug, medical device, or treatment approach works in people. There are several types of clinical trials. Treatment trials test new treatment options. Diagnostic trials test new ways to diagnose a disease. Screening trials test the best way to detect a… process and reports recent results. The Web site is maintained by the National Institutes of Health.
	The Empowered Patient Coalition The Empowered Patient Coalition is a consumer and advocate-led effort to inform, engage and empower the public to assume a greater role in their own medical treatment.
	Federation of State Medical Boards (817) 868-4000This group offers profiles on licensed doctors, osteopathic doctors, and physician assistants. For less than $10, you can find out facts about your doctor's education, any disciplinary actions, and certification, among other areas.
	Food and Drug Administration (888) 868-4000 The federal agency responsible for the regulation of drugs, medical devices and biologics. You can find information on drugs, blood products, recalls and safety alerts. The FDA also has a Web site called Drugs@FDA. This site provides detailed information about all FDA approved drug products. You can easily search by generic or brand name. To find this site go to www.fda.gov and search for Drugs@FDA
	Healthfinder This Web site offers links to hundreds of sites that provide reliable healthcare information and support to consumers. It is maintained by the U.S. Department of Health and Human Services.
	Marrowforums This is a Web site for patients with bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… diseases and their families, friends, and caregivers. It hosts a forum-style discussion group for patients and the people who support them. It also provides basic medical information and resources.
	MedlinePlus This Web site offers a wealth of information about health topics, drugs, and supplements. It also provides videos and interactive tutorials. The Web site is maintained by the National Institutes of Health.
	My PHR This Web site, created by the American Health Information Management Association (AHIMA) is a comprehensive resource for anyone interested in creating their own personal health record (PHR). It describes the benefits of creating a PHR, includes tools and tips for creating a PHR and provides stories from patients who have realized the benefit of using a PHR.
	National Institutes of Health This is the research arm of the U.S. Department of Health and Human Services. Its Web site offers a list of resources. To learn more about MDS, go to cancer.gov. To learn more about aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… , go to nhlbi.nih.gov.
	Patient Advocate Foundation (800) 532-5274 This group can help you find professional case managers who provide a variety of services to help patients to settle issues with access to care, medical debt, and job retention related to their illness. This group also provides resources for how to be your own advocate.
	PubMed This Web site provides more than 20 million citations for biomedical literature from MedlinePlus, life science journals, and online books. It is maintained by the National Institutes of Health.
	RxAssist RxAssist at offers a comprehensive database of the patient assistance programs run by the pharmaceutical companies , as well as practical tools, news, and articles. These patient assistance programs can provide free or low cost drugs to patients that qualify. They may also be able to help you work with your insurance company to get your drug covered.