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...
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...
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...
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...
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...
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...
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...
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...
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...
How Is Fabry Disease Treated?...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...
10 Questions to Ask Your Doctor When You Are Newly Diagnosed...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...
What to Expect From Genetic Counseling and Testing...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...
How Is Mucopolysaccharidoses Treated?...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...
What Is Medical PTSD?...Post-traumatic stress disorder, or PTSD, is anxiety in the aftermath of a traumatic event. You may think of it happening to a soldier returning from war or a victim of...
Welcome to RareDisease.net Stories!...At RareDisease.net, we believe that we are stronger together than we are alone. Living with or caring for someone with a rare disease can be a challenge, but the more...reactionscomments
Building a Caregiving Team: Finding In-Home Help...Life with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on work to running simple errands. Handling all of...
Help Center...You’ve come to the right place! Get answers to the most frequently asked questions about the inner workings of RareDisease.net, as well as the organization that powers it all –...
Community...Have a question? Post it in our forums and ask our community! Share your story or read about others living with a Rare Disease. PS. You can participate anonymously if...
Editorial Team...The Editorial Team works with its Medical Review Board and experienced medical writers to provide Health Union's Community Team with reliable, easy-to-understand information about a host of chronic health conditions...