Why Joining Your Rare Disease Community Is Important...When my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families...reactionscomments
Unknown pain disease?...Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a...reactions12repliesSymptoms
Does anyone here have Mast Cell Activation Syndrome?...Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's not The Top Couple of Ingredients I...reactions8repliesDiet & NutritionSymptomsTips & Advice
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to Resilience...Being a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my...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 Burnout...Advocacy burnout can look different for different people. Burnout can present itself in many different ways. Some possible signs of rare disease...reactions1comment
Learning to cope w/all my medical issues...I'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling...reactions26repliesCoping
Coping with books...I fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...reactions5replies
Becoming a Do-Not-Resuscitate Patient...Whenever I encounter new medical providers at any level of care, they are often surprised to discover that I have a do-not-resuscitate...reactionscomments
Working Remotely as a Caregiver...Work is a place where you can meet people, make connections, and socialize. But in this new era of working from home...reactionscomments
The Power of a Name: Why a Rare Disease Diagnosis Matters...Recently, 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 Plans...A 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 Disease...As our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the professionals who are giving this diagnosis...reactionscomments
Embracing Diverse Coping Mechanisms as Parent Caregivers...As a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound...reactionscomments
It's Just the Way You Are...I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went...reactions3comments
Living With Congenital Adrenal Hyperplasia...Living 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 Giveaway...The Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all...reactionscomments
FeaturedWhat fills your cups on hard days?...Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep...reactions114replies
Will you take our In America survey and help others understand the true impact of rare diseases? ...The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we...reactionsreplies
Kidney Transplant/Primary Immune Deficiency...Hi all! Feeling rather alone. I had a kidney transplant because I have Compliment 3 Glomerulopathy. I also have Common Variable Immune...reactions4replies
