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
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
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
Help Center...You’ve come to the right place! Get answers to the most frequently asked questions about the inner workings of RareDisease.net, as well...
How Therapies Treated My Musculoskeletal Injuries from Rare Disease...Due to short bowel syndrome (SBS), I've endured years of malnutrition, and even the years I've been well-nourished, I still have nutrient...reactions1comment
Role Reversal and the Patient-Caregiver Relationship...I have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother...reactionscomments
Developing Elevator Pitches for Rare Disease Advocacy...Most of us are familiar with the term "elevator pitch." An elevator pitch is sharing one's story with another person and requesting...reactionscomments
Who Am I? A Journey About Identity...Not long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might...reactions3comments
Tips for How to Set Boundaries With Others...More likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient...reactions11comments
Are You at Risk for MAC Lung Disease?...MAC lung disease is caused by Mycobacterium avium complex (MAC) germs. MAC germs are all around. They live in soil, water, household...reactionscomments
Questions to Ask Your Doctor About Living With MAC...If you have been diagnosed with MAC lung disease, you might have many questions that need answers. A lot of new information...reactionscomments
Living With X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a rare genetic condition that lasts a person’s entire life. It is caused by a mutation in the...reactionscomments
X-linked Hypophosphatemia and Genetics...X-linked hypophosphatemia (XLH) is a genetic condition. People with XLH have changes in a specific gene that affect how their body uses...reactionscomments
Questions to Ask Your Doctor When You Have X-linked Hypophosphatemia...Receiving a diagnosis of X-linked hypophosphatemia (XLH) can be challenging and overwhelming at first. Whether you are diagnosed as a baby, a...reactionscomments
Phrenic Nerve Palsy...Two and a half years ago I had acute neck and shoulder pain. This lead to severe dyspnea treated as asthma, but...reactions1comment
ARFGEF-1: Neurodevelopmental Spectrum Disorder...I grew up feeling different. I was told I never felt pain, yet I seemed to know when I was hurt. The...reactions6comments
What to Expect After a MAC Diagnosis...Being diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex...reactionscomments
Transitioning to Adult Care With Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from...reactionscomments
Starting a Family When You Have Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a genetic condition that can affect people of any sex. This is a rare condition that can...reactionscomments
Applying for Social Security Disability Benefits...Living with a chronic health condition may make working impossible at some point. Your symptoms can affect your ability to get your...
