Questions to Ask Your Doctor About Pompe Disease...Whether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition...reactionscomments
Finding a Support Person for Doctor Appointments...People with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent...reactionscomments
New Year… Same Old Rare Disease...The holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement...reactionscomments
Living With a Rare Kidney Disease...Most rare kidney diseases last a long time. There is no cure, and they often do not go away on their own...reactionscomments
How to Deal With Tough Mornings and Chronic Pain...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...reactionscomments
How Are Rare Kidney Diseases Diagnosed?...Many rare kidney diseases cause long-term damage. This damage can cause the kidneys to work less and less well over time. So...reactionscomments
What Is Adult-Onset Still’s Disease?...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...reactionscomments
Finding Friendship in the Rare Disease Community...When I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
Nutrition and Exercise With Adult-Onset Still’s Disease...Adult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with...reactionscomments
Pompe Disease and Genetics...Pompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar...reactionscomments
What Makes a Rare Disease Patient Advocate?...Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our...reactions2comments
What Is Power Posing?...Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide...reactionscomments
Yes, You Can Travel as a Dialysis Patient...When I got the news that my kidney function had diminished to the point that I needed dialysis, my heart sank. I...reactionscomments
5 More Practical Tips to Thrive After a Kidney Transplant...In part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep...reactionscomments
Resources for Veterans, LGBTQ+ People, and Other Special Groups...Coping with a chronic health condition can be challenging for you, your family, and your caregivers. You rely on your healthcare team...
How Do I Know If I Have Adult-Onset Still’s Disease?...Adult-onset Still’s disease (AOSD) is a rare inflammatory condition that affects mostly the joints. But it can affect many other areas of...reactionscomments
Gene Therapy for Hemophilia...For more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare...reactionscomments
What to Know About Kidney Transplants...Treating rare kidney diseases begins with medicines and lifestyle changes. These methods aim to treat the underlying causes of the kidney disease...reactionscomments
Questions to Ask Your Doctor When You Have Adult-Onset Still’s 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...reactionscomments
