Strategies for Coping With a Rare Disease...When you are diagnosed with a rare disease, you might feel overwhelmed about what to expect. Because few people have your disease, there may be a lack of information and... By Editorial Team 3 min readBookmark for later
Starting (and Sticking to) an Exercise Routine...Improving your physical fitness has a host of benefits, regardless of whether you have a rare disease or not. Walking, swimming, biking, or dancing can help you build a healthier... By Editorial Team 3 min readBookmark for later
Role of Genetics in Rare Diseases...Roughly 7,000 rare diseases have been identified so far. Of those, 8 out of 10 have a genetic cause. Understanding the root causes of disease can help us better understand... By Editorial Team 3 min readBookmark for later
Genetics 101...Our 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
Rare Disease Statistics...There are between about 5,000 and 10,000 conditions that are called rare. The US Rare Diseases Act of 2002 defined a rare condition as one that affects "small patient populations... By Editorial Team 2 min readBookmark for later
Rare Disease Research...Rare diseases present a special challenge to medical research. There are thousands of rare diseases. And more are being found each year with the help of genetic testing. But each... By Editorial Team 3 min readBookmark for later
Parenting While Managing a Rare Disease...Parenting can be incredibly rewarding. However, parenting is hard. Both parents and children are human, and there is no guidebook to raising a child. New trends, current research, and comparison... By Editorial Team 4 min readBookmark for later
Tips for Managing Brain Fog and Fatigue..."I just read that last chapter. Why can’t I remember what happened?" "I’ve never missed a deadline and just forgot a major one!" "I feel like I’m slogging through thick... By Editorial Team 3 min readBookmark for later
Myths and Misconceptions About Rare Diseases...People with rare diseases sometimes have to deal with misconceptions other people have about what it is like to live with a rare condition. Here are some facts that may... By Editorial Team 3 min readBookmark for later
Multiple Diagnoses: How to Advocate for Your Health...Editor’s Note: This article was written by Alene Brennan and originally appeared on our partner site Endometriosis.net. Because my health challenges started at such a young age, my parents were... By Editorial Team 3 min readBookmark for later
What to Know About Getting a Second Opinion...A diagnosis that does not feel right or a misdiagnosis (as so often can happen with rare diseases) can be overwhelming. You may have many questions about your diagnosis. You... By Editorial Team 3 min readBookmark for later
Managing Healthcare Expenses...Managing a chronic health condition can take a financial toll on you and your family. Costs add up quickly from medicines, testing, copays, travel, and more. But help is available... By Editorial Team 4 min readBookmark for later
Living With a Rare Disease...Doctors are trained to "look for horses not zebras" when trying to diagnose someone's illness. The problem for people with rare conditions is that they are the zebras among the... By Editorial Team 3 min readBookmark for later
How to Handle Insurance Denials and Limits...Finding out that your health insurance company has denied a claim can be frustrating and complicated. Your insurance company must provide you with the following pieces of information if it... By Editorial Team 3 min readBookmark for later
How Is Thyroid Eye Disease Treated?...Thyroid eye disease (TED) is a progressive condition. This means that it gets worse over time. There are 2 phases of TED: an active phase and an inactive phase. Each... By Editorial Team 3 min readBookmark for later
How Is Spinal Muscular Atrophy Treated?...Spinal muscular atrophy (SMA) is a genetic disorder where muscles become weak and waste away. It happens when spinal cord nerve cells die, causing important muscles to become inactive. It... By Editorial Team 4 min readBookmark for later
How Is Sickle Cell Disease Treated?...The most common treatments for complications of sickle cell disease (SCD) are hydroxyurea and blood transfusions. However, the type and severity of complications of SCD are different for everyone. So... By Editorial Team 3 min readBookmark for later
How Is Pulmonary Arterial Hypertension Treated?...Pulmonary arterial hypertension (PAH) is high blood pressure in the arteries of the lungs. The condition narrows, blocks, or destroys arteries in the lungs. This makes the heart work harder... By Editorial Team 3 min readBookmark for later
How Is Gaucher Disease Treated?...Gaucher (go-SHAY) disease is a rare, inherited genetic disorder. While Gaucher disease is rare, it is one of the most common of what are called lysosomal storage disorders. These are... By Editorial Team 3 min readBookmark for later
How Is Myasthenia Gravis Treated?...The goal of treating myasthenia gravis (MG) is to reduce or improve muscle weakness without causing side effects. Some people’s symptoms can improve to the point that they may only... By Editorial Team 4 min readBookmark for later
