Articles, Events, & Opportunities

Pompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar. These gene changes are called gene, or genetic...

Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our goal is to share the story of living...

Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide, hands on hips, chin raised to the sky...

When I got the news that my kidney function had diminished to the point that I needed dialysis, my heart sank. I was young, married, and fairly active with recreational...

In part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep your kidney working at its best. The next...

Adult-onset Still’s disease (AOSD) is a rare inflammatory condition that affects mostly the joints. But it can affect many other areas of the body too. AOSD is an autoimmune condition...

For more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare genetic disease in which blood does not clot...

Treating rare kidney diseases begins with medicines and lifestyle changes. These methods aim to treat the underlying causes of the kidney disease or the health problems that arise from it...

Living with adult-onset Still’s disease (AOSD) can be challenging and sometimes confusing. Even if you have been living with it for years, new questions can always come up. Staying in...

In the United States, a kidney disease is considered rare if it affects fewer than 200,000 people. There are more than 150 different types of rare kidney diseases, and they...

Pompe disease is a rare genetic condition that affects the muscles that connect to your bones and heart. It is also called glycogen storage disease II, acid-maltase deficiency, or acid...

Holidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday events is a common challenge. Many families prepare...

If you have been diagnosed with MAC lung disease, you might have many questions that need answers. A lot of new information may be thrown at you during your doctor’s...

Advocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make changes at the local, state, or even national...

Adult-onset Still’s disease (AOSD), systemic juvenile idiopathic arthritis (SJIA), and rheumatoid arthritis (RA) are all forms of arthritis that share many similar features. It can be hard to tell them...

As many as 80 percent of typical MAC lung disease cases can be cured with treatment. However, in some cases, MAC germs develop a resistance to antibiotic drugs. When this...

Content Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my life with a rare disease, I've learned if...

Living with a chronic condition can be exhausting. Caring for others also can be draining. People with chronic disease and their healthcare teams often experience burnout. Other caregivers, like family...

Being diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex (MAC) bacteria respond to prescription drugs (antibiotics) if...

Shortness of breath and fatigue are common symptoms of lung conditions. These issues can make it hard to want to exercise. They can also make it challenging to complete some...