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... By Editorial Team 3 min readBookmark for later
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)... By Editorial Team 3 min readBookmark for later
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... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 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... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
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... By Editorial Team 5 min readBookmark for later
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... By Editorial Team 4 min readBookmark for later
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... By Editorial Team 3 min readBookmark for later
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... By Editorial Team 4 min readBookmark for later
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... By Editorial Team 2 min readBookmark for later
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... By Editorial Team 4 min readBookmark for later
Eating Healthy Without Breaking the Bank...It can be a challenge to eat healthy without spending a lot. And when you are living with a rare health condition that may be costly, it can be even... By Editorial Team 3 min readBookmark for later
The Journey of Diagnosing a Rare Disease...The quest for a rare disease diagnosis is often referred to as a "journey" or "odyssey." The reasons it may take years to find a diagnosis are many. It is... By Editorial Team 4 min readBookmark for later
Disability Benefits...When you have a chronic medical condition, there may be times when you are not able to work. This can seriously affect your finances and your family’s. However, there is... By Editorial Team 3 min readBookmark for later
Cost of Living With a Rare Disease...Rare diseases are expensive. Anyone "living rare" likely knows that firsthand. Without a correct diagnosis, you may receive inappropriate care. Or you might miss a chance to prevent disease progression... By Editorial Team 3 min readBookmark for later
Coping With Chronic Pain and Stigma...Many people with rare health conditions can manage their pain using over-the-counter or prescription pain medicines, physical therapy, and exercise. But some people experience “breakthrough” pain. This is pain that... By Editorial Team 3 min readBookmark for later
How Is Pompe Disease Treated?...Pompe disease is a rare, inherited disease in which the body cannot process glycogen, a type of sugar. People with Pompe disease do not make enough of a chemical in... By Editorial Team 2 min readBookmark for later
Common Tests and Tools for Diagnosing a Rare Disease...Incorrect or delayed diagnosis of rare diseases is common. Because so few people have a particular rare condition, doctors you go to may have never seen someone with your condition... By Editorial Team 4 min readBookmark for later
Applying for Social Security Disability Benefits...Living with a chronic health condition may make working impossible at some point. Your symptoms can affect your ability to get your job done. When this happens, you may find... By Editorial Team 3 min readBookmark for later
Alternatives for Managing Chronic Pain...Chronic pain is pain that lasts for longer than 3 months. Some rare diseases can cause significant pain in the body. This leads people who live with chronic pain to... By Editorial Team 3 min readBookmark for later
