Recovering From Advocacy Burnout...Advocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease...reactions1comment
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...A special trip to New York City was a little over 24 hours away. I was going to honor one of my...reactionscomments
Community Spotlight: Rare Cancers...Rare cancers affect fewer than 40,000 people per year in the United States. These cancers make up about a quarter of all...reactionscomments
5 Changes I Would Like to See in the U.S. Healthcare System...As someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things...reactions4comments
Community Views: The Most Annoying Unsolicited Advice...If you have ever expressed your feelings or concerns to a loved one about your rare disease, they may have responded with...reactions3comments
Surprise! It's Rare Disease Day!...It's that special day of the year again. You know the one. The day when all of your friends bestow many a...reactionscomments
Shannon Stratton...Shannon Stratton is an artist and research administrator who was born with X-Linked Hypophosphatemia and diagnosed with Rheumatoid Arthritis at 18. Instead...
What It Means to Celebrate Moments as a Rare Disease Family...On my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's...reactionscomments
Holidays and Rare Diseases...Holidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday...reactions1comment
Attack Ataxia: Shundra's Journey...I have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar...reactions2comments
10 Reasons Why Students With a Rare Disease Should Consider a 504 Plan...As a caregiver for my daughter, who lives with challenges from a rare disease, I strive to protect her at home and...reactions4comments
What to Know About Rare Motor Neuron Diseases...Motor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles...reactionscomments
My Experience With New Jersey's Personal Preference Program...Have you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal...reactionscomments
Questions I Ask Myself on My Healing Journey...I started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have...reactionscomments
3 Things I Learned About Doctors After My Son's Rare Diagnosis...If you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate...reactionscomments
When You’re a 'Poster Child' for Your Rare Disease...I will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because...reactionscomments
Shifting the Focus of Goal Setting...Goal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on...reactionscomments
28 Years...It's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32...reactions10comments
A Rare CHANCE Life...My story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick...reactions3comments
Self-Care Is The Best Care...Simply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour...reactions1comment
