Developing Elevator Pitches for Rare Disease AdvocacyMost of us are familiar with the term "elevator pitch." An elevator pitch is sharing one's story with another person and requesting...reactionscomments
Groin Wiser: Adopting New Strategies to Manage My Rare DiseaseI recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia. My first...reactionscomments
Was I Just Soft? A Reflection on Getting a DiagnosisGetting diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in my late 20s had an impact on the way I see myself. hEDS is...reactionscomments
How to Observe Rare Disease Awareness DayI admit that I cannot resist the rare disease zebra branding. It's cute; zebras are close enough to horses to make my...reactionscomments
The Overflowing Cup: Childhood Trauma and Mental HealthRecently, I tried a new form of therapy: hypnotherapy. After 5 and a half years of counseling, I decided that while it...reactions3comments
Why Joining Your Rare Disease Community Is ImportantWhen my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families...reactionscomments
Why I Made My Home Wheelchair Accessible Sooner, Not Later"Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain...reactions3comments
Recovering From Advocacy BurnoutAdvocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease...reactions1comment
Becoming a Do-Not-Resuscitate PatientWhenever I encounter new medical providers at any level of care, they are often surprised to discover that I have a do-not-resuscitate...reactionscomments
The Power of a Name: Why a Rare Disease Diagnosis MattersRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
The Big Craple Incident: How My Rare Disease Canceled My Travel PlansA special trip to New York City was a little over 24 hours away. I was going to honor one of my...reactionscomments
3 Ways to Help Professionals Understand Your Rare DiseaseAs our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the professionals who are giving this diagnosis...reactionscomments
Living With Congenital Adrenal HyperplasiaLiving with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a...reactionscomments
Fill Your Cup GiveawayThe Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all...reactionscomments
Questions I Ask Myself on My Healing JourneyI started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have...reactionscomments
What Is the Impact of Rare Disease Awareness Days?January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes...reactionscomments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf 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 DiseaseI will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because...reactionscomments
Art As Rare Disease Advocacy I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at...reactions7comments
Shifting the Focus of Goal SettingGoal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on...reactionscomments
