Dusty Terrill...Dusty Terrill is a nature-loving and adventure-seeking travel advisor, rare disease advocate, writer, and research participant at the National Institutes of Health...
Frank Rivera...Frank was previously a health leader on RareDisease.net. I am Frank Rivera, a rare disease patient advocate, an Illumina Ambassador, A RDLA...
Asking for Help and Applying for Disability...Editor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at...reactionscomments
Acromegaly: My Ups and Downs...The year my son Tyler entered kindergarten, I started the school year active and involved in Tyler’s classroom. But, by December I...reactions2comments
Grieving Loss in the Rare Disease Community...Rare disease communities provide a unique and much-needed benefit to their members. For many of us, it's through these communities that we...reactionscomments
Natalie Abbott...Natalie Abbott was diagnosed with Moebius syndrome, a rare neuromuscular movement disorder, at birth and with rare autoimmune diseases throughout childhood. When...
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
