My Accidental Rare Disease Diagnosis (Part 2)...This is the second article in a 2-part series. Be sure to check out Part 1: New Symptoms, New Fears: The Beginning...reactionscomments
A Journey to My Authentic Self...I have always strived to see the silver linings or the good in every situation. My immune deficiency diagnosis of hyper IgE...reactionscomments
What a Caregiver Means to Me...I talked with an old friend from high school who just found out he has a rare disease about how much our...reactions4comments
Medical Review Board...The Health Union Medical Review Board is made up of board-certified healthcare professionals with extensive experience in their respective fields. They review...
SSI and Medicaid: Moving to a Place Based on Healthcare..."What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this...reactionscomments
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
