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...
Into the Unknown With My Rare Disease...I had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly...reactionscomments
What Is the Impact of Rare Disease Awareness Days?...January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes...reactionscomments
Disability Pride Month With a Rare Disease...Disability Pride Month is celebrated in July to commemorate the signing of the Americans with Disabilities Act (ADA) in 1990. As someone...reactions1comment
What to Know About Support Groups...Support groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare...reactions6comments
Community Conversations: Sharing Our Experiences With Rare Diseases...Every rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses...reactionscomments
Voices in the Rare Disease Community: What's Your Story?...Every day, we take in stories from the world around us. We consume them on social media. We read about them in...reactionscomments
Lessons Learned in Navigating Medical Debt...With any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on...reactions6comments
Disclosure in the Workplace...When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have...reactions10comments
My Approach to Taking Medications...In my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually...reactions5comments
Crafting Hope: How Art Helps Me Navigate Rare Disease...Living with a rare disease can be exhausting and monotonous. The uncertainty of living with a chronic condition can cast a shadow...reactions6comments
Exploring Non-Drug Pain Management Options...Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
Fighting Misconceptions Can Save Lives: Rare Disease Surveillance...Misconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage...reactionscomments
A Guide to Awareness Proclamations: What Are They and Why Do They Matter?...Let’s talk about awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a...reactionscomments
Coping With Chronic Pain and Stigma...Many people with rare health conditions can manage their pain using over-the-counter or prescription pain medicines, physical therapy, and exercise. But some...
Coordinating Care With a Rare Disease...Many general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get...reactions1comment
Living an Authentic Life With a Rare Disease...I was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting...reactions5comments
