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
Staying Informed on Your Rare Disease for Better Advocacy...Ever since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...reactions3comments
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
