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...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...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...

...Fabry disease is a rare, inherited condition caused by a mutation in the GLA gene. This gene is found on the X chromosome. The GLA gene controls the alpha-galactosidase A...

...It is often hard to know what to ask, or even where to begin, when you have questions about a new diagnosis. Many community members on this site talk about...

...If you have a rare disease or one runs in your family, your doctor might suggest genetic counseling and testing. People get genetic testing for a variety of reasons. You...

...Mucopolysaccharidoses (MPS) are a group of rare genetic disorders that affect the body's ability to break down a particular type of sugar. These sugars are called glycosaminoglycans. When they build...