How to Get a Diagnosis for a Rare DiseaseGetting a new rare disease diagnosis can be a long and difficult journey. Some conditions, such as narcolepsy, are so misunderstood that...reactions26comments
How I Start Difficult Conversations About My Rare DiseaseWhen living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn...reactions11comments
Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
What If I Hadn't Been Born With a Rare Disease?There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was...reactionscomments
The Power of the Words We Tell OurselvesI didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression...reactions5comments
Community Views: The Biggest Misconception About My Rare DiseaseHaving a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactionscomments
Rare Disease and AI: How Are You Using It for Your Health?Something has shifted in the last couple of years. A late-night symptom search now sometimes starts with an AI summary before it...reactionscomments
Living With Congenital Adrenal HyperplasiaLiving with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a...reactionscomments
Living with a Syndrome Without a Name (SWAN)When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a...reactionscomments
Navigating the Chronic Illness Conversation: 4 Tips for Talking With Loved OnesIt can be so hard for people outside of the rare disease community to truly understand what we go through—ongoing symptoms, fatigue...reactions6comments
Community Views: We Are Rare, But Not AloneRare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress...reactionscomments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not...reactions1comment
How to Navigate Online Doctor RatingsEditor’s Note: This article was originally written by Elizabeth Medeiros and shared by our partner site Psoriatic-Arthritis.com. The internet has changed how...reactions2comments
Where's Your Line? Navigating Repeated IV Attempts with a Rare DiseaseMy experience with a rare disease, which was the same for my mother too, is that our health is complicated, and so...reactions4comments
Why a Rare Disease Diagnosis Matters Beyond TreatmentRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactions8comments
5 Tips for Coping with Stress and Chronic IllnessLiving with a rare disease can be stressful in its own right. For example, many patients face a history of medical trauma...reactionscomments
Why Joining Your Rare Disease Community Is ImportantWhen my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...reactionscomments
Setting Boundaries: What Self-care Looks LikeWhile I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...reactions3comments
I’ve Learned Self-care. What About Self-love?When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves...reactionscomments
