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
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 diagnosis. Once you received your diagnosis, perhaps your... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 it ALL described me at the time I... By Gina Miller2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 first, I was genuinely confused. I didn't know... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments2 comments
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 the steps to achieve that goal. Whenever I... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
New Year’s Resolutions and Rare DiseasesI'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make big goals that are not necessarily attainable, and... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting Back Into Advocacy After BurnoutReaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not just in the career field. Living with chronic... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control over your own health. I live with narcolepsy... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Which Specialist Needs to Know Your Symptoms? All of Them.Time and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates – including bothersome symptoms – even when it is... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Groin Older: Aging With HemophiliaAs a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a more "normal" life possible, or at least one... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments4 comments
Reflecting on the People We Would Never Meet OtherwiseIt's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see the good in every situation. I will admit... By Dusty Terrill3 min readBookmark for laterReactions 0 reactions Comments0 comments
Personal Grooming With a Rare DiseaseLiving with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list of things it impacts in my life is... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
How Do I Find a Specialist for My Rare Disease?When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide you on your journey is key. The specialist... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments