Role Reversal and the Patient-Caregiver RelationshipI have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me)... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-careAs an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind are extremely tired. Because what choice do I... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 books. We listen to them on podcasts. We... By RareDisease.net Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips for Finding the Right DoctorFinding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease community who are looking for specialists to help... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
Coordinating Care With a Rare DiseaseMany general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 action in approximately 5 minutes or less. But... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 pulled groin muscle was the star of the... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 a genetic disease, and I was born with... By Annie-Danielle Grenier2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 horse girl self happy, and unlike other rather... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 was incredibly helpful, I also needed another form... By Dusty Terrill3 min readBookmark for laterReactions 0 reactions Comments3 comments
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. At first, I was hesitant to join because... By Alex Gaudlap2 min readBookmark for laterReactions 0 reactions Comments0 comments
Making My Home Disability Friendly Now Rather Than Later"Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain a wheelchair and utilize it to participate in... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments3 comments
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 advocacy burnout can include excessive fatigue, lack of... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 (DNR) order and I’m not even age 40... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting a Rare Disease Diagnosis: What's in a Name?Recently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for several years now. Although she had been to... By Erin Leibowitz3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 favorite humans, Georgia Arnold, for her contributions to... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 to new families. I feel that they believe... By Alex Gaudlap2 min readBookmark for laterReactions 0 reactions Comments0 comments
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, so it is no surprise that this year... By RareDisease.net Team1 min readBookmark for laterReactions 0 reactions Comments0 comments
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 learned a lot along the way. I am... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 to rare diseases: there are over 7,000 identified... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments