Articles, Events, & Opportunities

If you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even once we find a treatment that works for...

Many rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider when creating a treatment plan for a rare...

Rare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and each one has unique features. Even the same...

Right now, there is no cure for Pompe disease. The main treatment is enzyme replacement therapy (ERT). ERT drugs help replace the protein (enzyme) that is low or missing in...

Having a mental illness is a double-edged sword. If you say too much, you're a complainer. But if you don't say anything, people think you are fine. Let me just...

We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with a rare disease. New here? We invite you to...

The kidneys filter extra water and waste out of the blood and make urine. They also make hormones that help control blood pressure and trigger the body to make red...

Navigating gatherings with loved ones can be tricky enough on its own. Throw in a rare disease – and maybe a few extra chronic conditions – and I find myself...

Dialysis is a type of treatment for people who have kidney failure, also known as end-stage kidney disease (ESKD). Over time, people with rare kidney diseases can develop enough kidney...

I was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic disease I inherited from my mother, who inherited...

Living with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative in reaching your health goals. That journey alone...

Whether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition. Even if you have been living with Pompe...

People with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent side effects too. That is why medical experts...

The holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement is something I like to do every year...

Most rare kidney diseases last a long time. There is no cure, and they often do not go away on their own. This can make living with a rare kidney...

Editor’s Note: This article originally was written by Annelyse Andal and shared by our partner site Psoriatic-Arthritis.com. You wake up to the sound of your alarm clock. With sleepy and...

Many rare kidney diseases cause long-term damage. This damage can cause the kidneys to work less and less well over time. So, early diagnosis is key. The sooner you know...

Adult-onset Still’s disease (AOSD) is a rare type of autoinflammatory arthritis. An autoinflammatory condition occurs when the body’s immune system, which creates inflammation, does not work properly. In people with...

When I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had never heard of my disease before, let alone...

Adult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with medicines that work on the immune system to...