Updated Articles and Resources
- ALS: A Guide For Patients And Families - Review of ALS: A Guide For …Created: 2009-08-28 @ 17:31:17 EDT
Review of the book Amyotrophic Lateral Sclerosis: A Guide For Patients and Families by Hiroshi Mitsumoto, MD, 2009 3rd Edition, published by Demos Medical Publishing… - Clinical Trial - What Is A Clinical TrialCreated: 2009-08-22 @ 21:02:55 EDT
Information about what a clinical trial is, what the different types of clinical trials are, and what the phases of a clinical trial are… - In Need Of Diagnosis (INOD) - Information About In Need Of DiagnosisCreated: 2009-08-21 @ 18:04:33 EDT
Information about the organization In Need Of Diagnosis (INOD) including its mission, resources, and contact information… - Hydrolethalus Syndrome - What Is Hydrolethalus SyndromeCreated: 2009-08-21 @ 12:43:03 EDT
Information about hydrolethalus syndrome, a genetic disorder, including its symptoms and diagnosis… - Informed Consent - What Is Informed ConsentCreated: 2009-08-18 @ 10:48:35 EDT
Information about what informed consent is and how it relates to a clinical trial… - Clinical Trial - What Is a Clinical TrialCreated: 2009-08-14 @ 16:28:38 EDT
Information about what a clinical trial is and why it is done… - NDRI - Information About The NDRICreated: 2009-08-12 @ 17:51:25 EDT
Information about the NDRI (National Disease Research Interchange), including the National Rare Disease Biospecimen Resource (NRDBR)… - Rare Diseases Clinical Research Network - Information About Rare Dis…Created: 2009-08-11 @ 18:53:59 EDT
Information about the Rare Diseases Clinical Research Network of the U.S. National Institutes of Health (NIH)… - Scoliosis - What Is ScoliosisCreated: 2009-08-02 @ 23:17:14 EDT
Information about what scoliosis is and why it happens… - Marfan Syndrome - What Is Marfan SyndromeCreated: 2009-07-26 @ 22:45:33 EDT
Information about Marfan syndrome, a connective tissue disorder, including symptoms, diagnosis, and treatment… - Comprehensive Metabolic Panel - What Is a Comprehensive Metabolic Pa…Created: 2009-07-24 @ 17:17:32 EDT
Describes what a metabolic workup is and how it might be used in diagnosis of an illness or disease… - Syndrome - What Is a SyndromeCreated: 2009-07-20 @ 14:45:02 EDT
Definition of what syndrome is in medicine and examples of some rare syndromes… - SMA - Information About SMACreated: 2009-07-20 @ 11:31:40 EDT Updated: 2009-07-20 @ 11:38:16 EDT
Information about SMA (spinal muscular atrophy), including the types, symptoms, diagnosis, and treatment… - Brown-Vialetto-Van Laere Syndrome - BVVL- Information About BVVLUpdated: 2009-10-19 @ 16:36:53 EDT
Information about Brown-Vialetto-Van Laere syndrome, including symptoms, diagnosis, and treatment… - Why Is Getting A Rare Disease Diagnosis So Difficult - Rare Disease …Updated: 2009-08-21 @ 18:09:05 EDT
Reasons why getting a diagnosis for a rare disease can be a difficult, long and frustrating process… - Waiting For A Diagnosis - I'm Still Waiting For A Diagnosis…Updated: 2009-06-12 @ 17:16:20 EDT
People who are waiting for a rare disease diagnosis share their stories… - My Symptoms Were A Mystery - Mystery Symptoms…Updated: 2009-05-13 @ 20:57:27 EDT
Readers tell their stories of searching for a rare disease diagnosis, and mystery symptoms, and going without a diagnosis for a long time…