Articles, Events, & Opportunities

As a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with narcolepsy is slow, with at least 2 scheduled...

A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming...

In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins cause too much inflammation. Over time, this can...

Medical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed. This is likely most understandable amongst the rare...

Living with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make visits to the emergency room, urgent care center...

It takes a special person to be a caregiver. There are different types of caregivers; some are partners, some are family, and others are friends. They all have a special...

End-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure. If you have kidney failure, you will need...

Disclosing a medical condition is tricky territory because we always have to be prepared for the worst possible reaction. Sadly, the scale of what that means depends on what you...

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...