When Illness Calls: A Tale of One Rare Disease...As a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with...reactionscomments
The Impact of Rare Disease on Siblings...A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the...reactionscomments
Tired of Doctors Calling Me Unusual...I've learned a lot about the medical profession over the years and here in the west, they are trained to look at...reactions6comments
Caregiver's Love...It takes a special person to be a caregiver. There are different types of caregivers; some are partners, some are family, and...reactionscomments
Using Meditation for Stress Relief...Meditation is an ancient practice that began thousands of years ago. It originally was used as part of a person’s spiritual practice...
Coping With Specialty Medication Mayhem...If you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even...reactionscomments
Mental Health and Having a Rare Disease Is a Double-edged Sword...Having a mental illness is a double-edged sword. If you say too much, you're a complainer. But if you don't say anything...reactionscomments
Community Rules...These rules apply to all activity on RareDisease.net or Health Union operated properties, including but not limited to the website, RareDisease.net Facebook...
Finding a Support Person for Doctor Appointments...People with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent...reactionscomments
10 Questions to Ask Your Doctor When You Are Newly Diagnosed...It is often hard to know what to ask, or even where to begin, when you have questions about a new diagnosis...
New Year… Same Old Rare Disease...The holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement...reactionscomments
How to Deal With Tough Mornings and Chronic Pain...Editor’s Note: This article originally was written by Annelyse Andal and shared by our partner site Psoriatic-Arthritis.com. You wake up to the...reactionscomments
Finding Friendship in the Rare Disease Community...When I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had...reactionscomments
What Makes a Rare Disease Patient Advocate?...Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our...reactions2comments
What Is Power Posing?...Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide...reactionscomments
Gene Therapy for Hemophilia...For more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare...reactionscomments
Multiple Diagnoses: How to Advocate for Your Health...Editor’s Note: This article was written by Alene Brennan and originally appeared on our partner site Endometriosis.net. Because my health challenges started...
What to Know About Getting a Second Opinion...A diagnosis that does not feel right or a misdiagnosis (as so often can happen with rare diseases) can be overwhelming. You...
Amy’s story: Let’s play a little game...● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up...reactions5comments
My Mental Health Discoveries...Content Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my...reactionscomments
