So You Have a Rare Disease… Now What?Being diagnosed with a rare disease can be shocking, even scary! When I was diagnosed with Narcolepsy Type 1, I was relieved to know what the source of the problem... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Asthma and Nontuberculous Mycobacterial (NTM) Lung DiseaseAn estimated 86,000 people in the United States live with nontuberculous mycobacterial (NTM) lung disease. And the number of people diagnosed with NTM – especially among women and older adults... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Community Spotlight: Glycogen Storage DiseasesGlucose is an important sugar that bodies need for energy. The body packs small molecules of glucose into large molecules called glycogen. Glycogen is stored in the cells of the... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Voting with a Rare DiseaseVoting is a fundamental American right, but it has special meaning for people with disabilities or health conditions. Until federal laws like the Americans with Disabilities Act (ADA) were enacted... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
When a Low Probability Feels ScaryI’m no stranger to autoimmune conditions. Let's take a look: I am among the roughly 1% of the population that has celiac disease, an autoimmune condition related to the consumption... By Jessica Hanson2 min readBookmark for laterReactions0reactionsComments1 comments
How Exercise Kept Me Out of the Hospital Until I Was 26Editor’s Note: This article was written by Megan Barlow and originally appeared on our Cystic-Fibrosis.com community. I have always been active. Since I can remember, I’ve been involved in all... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Community Spotlight: Rare CancersRare cancers affect fewer than 40,000 people per year in the United States. These cancers make up about a quarter of all cancers and account for about a quarter of... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Finding a TherapistI’m a fan of therapy, but to be honest, I personally haven’t always found it to be helpful in the past. Perhaps I just hadn’t found the right therapist for... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments
What Is Gene Therapy?Genes are the pieces of DNA that make us who we are. They determine our eye and hair color, how tall we will be, and if we are prone to... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
ICD Codes: Why They Matter in Rare DiseaseThe International Statistical Classification of Diseases and Related Health Problems (ICD) is used worldwide to standardize the classification of diseases. It is used as a uniform way to collect statistics... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
What is a SWAN?When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a diagnosis. But what happens when the results fail... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Genetics 101Our genes are like a recipe book for our bodies. They tell our cells what to do, how to grow, and how to repair themselves. Genes play a role in... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Understanding Clinical TrialsA clinical trial is a type of research. Research is the process scientists use to explain how our bodies work or why our bodies stop working well. Clinical trials are... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Clinical Trial GlossaryClinical trials or studies have a language of their own. It helps to understand the common terms doctors use when talking about a clinical trial before you sign up. Here... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Clinical Trial ParticipationClinical trials are medical studies that pose a question: Does a new treatment work better than older treatments? Each year, thousands of treatments are tested in controlled experiments called clinical... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
RareDisease.net Giveaway Terms and ConditionsThese Official Rules apply to any giveaway (or "Promotion") published on RAREDISEASE.NET, a Health Union ("Health Union" or "We") owned and operated website. For conflicts between the Promotional giveaway article... By Editorial Team 5 min readBookmark for laterReactions0reactionsComments0 comments