Founding a Rare Disease Non-profit: The Importance of Advocate Self-care...As an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind...reactionscomments
Voices in the Rare Disease Community: What's Your Story?...Every day, we take in stories from the world around us. We consume them on social media. We read about them in...reactionscomments
Tips for Finding the Right Doctor...Finding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease...reactionscomments
Adrenal hormones...Hi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system...reactions3repliesTips & Advice
Parental Partnership: Supporting Families With a Child Affected by a Rare Disease...When I became a mother at 26 years old and my husband a father at 27 years old, we learned that the...reactionscomments
Living with Mast Cell Activation...62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I...reactions3replies
My rare disease caused my kidney failure ...I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have...reactions7replies
Coordinating Care With a Rare Disease...Many general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get...reactions1comment
Understanding Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also...reactionscomments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...My 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with...reactionscomments
What do you guys think this is ...I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all...reactions2repliesDiagnosisTips & Advice
Understanding Congenital Adrenal Hyperplasia...Congenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized...reactionscomments
Developing Elevator Pitches for Rare Disease Advocacy...Most 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 Disease...I recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia. My first...reactionscomments
Living With Adult-onset Still's Disease?...Has anyone been diagnosed with adult-onset Still's disease? What was your diagnosis experience like? How do you manage life with AOSD?...reactionsrepliesCopingDiagnosis
Was I Just Soft? A Reflection on Getting a Diagnosis...Getting diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in my late 20s had an impact on the way I see myself. hEDS is...reactionscomments
Mast Cells trigger my self ...anyone else have Mast cell and histamine problems? hot and cold intolerance?...reactions8repliesAwarenessSymptoms
How to Observe Rare Disease Awareness Day...I 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 Health...Recently, I tried a new form of therapy: hypnotherapy. After 5 and a half years of counseling, I decided that while it...reactions3comments
