Caring for a Child With a Rare Disease...Raising a child is never easy, but it can be especially challenging if your child has a rare disease. There are 5,000...
Finally Diagnosed... Now What?...A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known...reactionscomments
When a Low Probability Feels Scary...I’m no stranger to autoimmune conditions. Let's take a look: I am among the roughly 1% of the population that has celiac...reactions1comment
New Year’s Resolutions and Rare Diseases...I'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make...reactionscomments
The Weight of Rare Disease Giveaway...The Weight of Rare Disease Giveaway is now closed. Thank you for your interest! Living with a rare disease comes with daily...reactionscomments
Glasses as a Form of Unique Expression With Rare Disease...Last week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have...reactions2comments
Aimee Perez...I was officially diagnosed with psoriasis at 17 years old in 2005. I experienced my first sign of plaque psoriasis at 12...
Finding Your Advocacy Voice: Embracing a Safe Community...As caregivers, warriors, and allies for individuals with rare diseases, finding our advocacy voice is crucial to raising awareness, promoting understanding, and...reactions4comments
Shining a Light on Rare Diseases...As a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty and heartache is normal...reactionscomments
Grief and Reimagining Advocacy Goals...Life with a rare disease can be unpredictable, and the mental health toll can be significant as we often grapple with loss...reactions3comments
Changing Scarcity Mindset to a Growth Mindset With Rare Disease...I have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall...reactions2comments
How Is Adult-Onset Still’s Disease Treated?...In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins...reactionscomments
What Is the Difference Between Still’s Disease, Juvenile Idiopathic Arthritis, and Rheumatoid Arthritis?...Adult-onset Still’s disease (AOSD), systemic juvenile idiopathic arthritis (SJIA), and rheumatoid arthritis (RA) are all forms of arthritis that share many similar...reactionscomments
Balancing Work and Caregiving: Parenting Kids With Special Needs...Every morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes...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
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
