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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...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...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...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...
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...
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...
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...
Health Resources...Living with a chronic health condition can be challenging, frustrating, and tiring. You might feel like your life is on hold. Frequent...
