From Reactive to Proactive: Self-Administered Treatment...There's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once...reactions5comments
Am I Too Chill About My Rare Disease?...Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since...reactionscomments
My Journey with Alport Syndrome...Well, I doubt anyone will read this or even care, but I’m writing it anyway. I’m a single, straight 31‑year-old woman, currently...reactions1comment
My Rare Disease: Primary Immunodeficiency CVID...Hi. My name is Sandy. Here's my story. All my life I struggled with multiple infections, viruses and sickness. I can remember...reactions2comments
No One Thought to Check...I have had hematuria most of my life. I was diagnosed with it in my 20s. I had so many Intravenous Pyelograms...reactions2comments
Living for the Good Things...Living with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control...reactionscomments
How to Manage Fluctuating Symptoms With Rare Disease...Have you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1...reactions3comments
So You Have a Rare Disease… Now What?...Being diagnosed with a rare disease can be shocking, even scary! When I was diagnosed with Narcolepsy Type 1, I was relieved...reactions7comments
Journaling As a Daily Tool for Rare Disease...When I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms...reactions12comments
A Rare Reality: 5 Crucial Takeaways for Mental Health Awareness...Like many in the rare disease community, maintaining my physical and mental health is ongoing work for me. Recently, I've been working...reactions2comments
Strategies for Coping With a Rare Disease...When you are diagnosed with a rare disease, you might feel overwhelmed about what to expect. Because few people have your disease...
Keeping Your Medical Records Organized...Keeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With...reactionscomments
Understanding and Managing the Non-Pancreatitis Symptoms of Familial Chylomicronemia Syndrome...When people talk about familial chylomicronemia syndrome (FCS), they often focus on acute pancreatitis. This severe abdominal pain is a serious and...reactionscomments
What Is Familial Chylomicronemia Syndrome (FCS)?...Familial chylomicronemia syndrome, or FCS, is a metabolic disorder. This means it is a problem with how the body processes substances to...reactionscomments
Living With a Rare Disease...Doctors are trained to "look for horses not zebras" when trying to diagnose someone's illness. The problem for people with rare conditions...
Community Views: The Biggest Misconception About My Rare Disease...Having a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do...reactionscomments
My Chronic Pain Scale: Describing Pain with Multiple Rare Diseases...I don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But...reactions6comments
My Rare Disease Holiday Survival Guide...Living with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get...reactions3comments
3 Ways I Combat Burnout...As a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up...reactionscomments
About Us...At RareDisease.net we empower patients and caregivers to take control of rare diseases by providing a platform to learn, educate, and connect...
