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...reactionscomments
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...reactionscomments
Clinical Trial Participation...Clinical 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...reactionscomments
How Is Hemophilia Treated?...Hemophilia is a bleeding disorder that prevents the blood from clotting properly. This can cause excessive bleeding, especially in the muscles, joints, and tissues. There is currently no cure for...
How Is Amyotrophic Lateral Sclerosis Treated?...Amyotrophic lateral sclerosis (ALS) is a disease of the nervous system that gets worse over time. It is also known as Lou Gehrig's disease, after a baseball player who was...
How Is Amyloidosis Treated?...Amyloidosis is a rare disease in which an abnormal protein called amyloid builds up in the organs. The heart, kidneys, liver, spleen, nervous system, or digestive tract are all organs...
How Are Neuroendocrine Tumors Treated?...Neuroendocrine cells are specialized cells with traits similar to both nerve cells (neuro) and hormone-releasing cells (endocrine). Neuroendocrine cells are found throughout the body, so neuroendocrine tumors may be found...
Health Resources...Living with a chronic health condition can be challenging, frustrating, and tiring. You might feel like your life is on hold. Frequent hospital stays, difficult or noticeable symptoms, and constant...
Finding a Job That Fits Your Health Needs...Work can be hard when you have a rare chronic disease. Companies generally do not offer as much flexibility as is needed for doctor's appointments, breaks for midday treatments, and...