Search

...Work can be hard when you have a rare chronic disease. Companies generally do not offer as much flexibility as is needed...

...It can be a challenge to eat healthy without spending a lot. And when you are living with a rare health condition...

...The quest for a rare disease diagnosis is often referred to as a "journey" or "odyssey." The reasons it may take years...

...When you have a chronic medical condition, there may be times when you are not able to work. This can seriously affect...

...Rare diseases are expensive. Anyone "living rare" likely knows that firsthand. Without a correct diagnosis, you may receive inappropriate care. Or you...

...Many people with rare health conditions can manage their pain using over-the-counter or prescription pain medicines, physical therapy, and exercise. But some...

...Pompe disease is a rare, inherited disease in which the body cannot process glycogen, a type of sugar. People with Pompe disease...

...Incorrect or delayed diagnosis of rare diseases is common. Because so few people have a particular rare condition, doctors you go to...

...Living with a chronic health condition may make working impossible at some point. Your symptoms can affect your ability to get your...

...Chronic pain is pain that lasts for longer than 3 months. Some rare diseases can cause significant pain in the body. This...

...Fabry disease is a rare, inherited condition caused by a mutation in the GLA gene. This gene is found on the X...

...It is often hard to know what to ask, or even where to begin, when you have questions about a new diagnosis...

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

...Mucopolysaccharidoses (MPS) are a group of rare genetic disorders that affect the body's ability to break down a particular type of sugar...

...Post-traumatic stress disorder, or PTSD, is anxiety in the aftermath of a traumatic event. You may think of it happening to a...

...Life with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on...

...You’ve come to the right place! Get answers to the most frequently asked questions about the inner workings of RareDisease.net, as well...

...Have a question? Post it in our forums and ask our community! Share your story or read about others living with a...

......