Webinar: Moments of Mindfulness – A Patient's Perspective...What do people mean when they talk about practicing mindfulness? What are they actually doing? How much time does it take? Do...reactionscomments
Try Walking in My Brace...Life with a bleeding disorder makes getting around a whole lot harder as I age. I have moderate hemophilia and consider myself...reactionscomments
Not Medically Fragile...My daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was...reactions2comments
My MG Journey...I’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could...reactions6comments
Understanding Non-apparent Disabilities in the Workplace...About 1 in 4 American adults live with a disability. Many people living with a disability are able to work and do...reactions2comments
Erin Leibowitz...Erin Leibowitz is a writer and patient advocate who was diagnosed with metastatic pancreatic neuroendocrine cancer shortly before her 30th birthday. Neuroendocrine...
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
