Using Meditation for Stress Relief...Meditation is an ancient practice that began thousands of years ago. It originally was used as part of a person’s spiritual practice. But it has gained popularity in recent years...
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...
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...
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...
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...Reactions0reactionsComments0 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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
How Is Idiopathic Pulmonary Fibrosis Treated?...Idiopathic pulmonary fibrosis (IPF) is a serious lung disease. It occurs when the tissue around air sacs (alveoli) in the lungs gets thick and stiff. This makes it harder to...
How Is Hypoparathyroidism Treated?...The parathyroid glands are small glands located in the neck next to the thyroid glands. You have 4 of them and they are pea-sized. These glands make parathyroid hormone (PTH)...
Understanding Clinical Trials...A 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...Reactions0reactionsComments0 comments
Clinical Trial Glossary...Clinical 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...Reactions0reactionsComments0 comments