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...Pompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar...

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

...Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide...

...When I got the news that my kidney function had diminished to the point that I needed dialysis, my heart sank. I...

...In part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep...

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

...For more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare...

...Treating rare kidney diseases begins with medicines and lifestyle changes. These methods aim to treat the underlying causes of the kidney disease...

...Living with adult-onset Still’s disease (AOSD) can be challenging and sometimes confusing. Even if you have been living with it for years...

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

...Pompe disease is a rare genetic condition that affects the muscles that connect to your bones and heart. It is also called...

...Holidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday...

...If you have been diagnosed with MAC lung disease, you might have many questions that need answers. A lot of new information...

...Advocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...

...Adult-onset Still’s disease (AOSD), systemic juvenile idiopathic arthritis (SJIA), and rheumatoid arthritis (RA) are all forms of arthritis that share many similar...

...As many as 80 percent of typical MAC lung disease cases can be cured with treatment. However, in some cases, MAC germs...

...Content Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my...