In America: What's That?The In America survey is now closed. Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from you... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Transitioning From Pediatric to Adult Care With a Rare DiseaseYoung people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not many places exist for teens and caregivers to... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Xanadu I or Don't I? A Rare Disease Roller Skating OdysseyIn the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun... By Shawn Decker3 min readBookmark for laterReactions 0 reactions Comments0 comments
Yoga Doesn’t Cure My Autoimmune Diseases"Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter suggestion my way. I'll take another nickel, please... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments2 comments
New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third baby, and a surprise one at that. My... By Dusty Terrill5 min readBookmark for laterReactions 0 reactions Comments0 comments
Life With a Rare Disease: How the Little Things Add UpI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking about lately as I've been struggling with this... By Annie-Danielle Grenier2 min readBookmark for laterReactions 0 reactions Comments1 comments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And most doctors in the emergency room (ER) are... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
The 2024 Social Health Awards ProgramEditorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards... By Editorial Team 1 min readBookmark for laterReactions 0 reactions Comments0 comments
The Power of the Words We Tell OurselvesI didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression, anxiety, and anger as part of my medical... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments2 comments
Finally Diagnosed... Now What?A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known about them. A survey by the National Organization... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
SSI and Medicaid: Moving to a Place Based on Healthcare"What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this point, the Social Security agent kindly explained to... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Setting Boundaries: What Self-care Looks LikeWhile I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting boundaries and one's well-being. I spent most of... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
A Journey to My Authentic SelfI have always strived to see the silver linings or the good in every situation. My immune deficiency diagnosis of hyper IgE syndrome came from a near-death experience. I was... By Dusty Terrill2 min readBookmark for laterReactions 0 reactions Comments0 comments
Zebras Can’t Be Tamed: Coexisting With a Rare DiseaseZebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
My Multidisciplinary Care Team: Why I Love My Hemophilia Treatment CenterI used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from a nosebleed or some type of... By Shawn Decker4 min readBookmark for laterReactions 0 reactions Comments0 comments
Asking for Help and Applying for DisabilityEditor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at asking for help when I’m sick. It’s ironic... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Children and Rare Diseases: Tips for Navigating Emergency CareWhen your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the unexpected happens, which could mean a trip to... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
What to Expect During a Disability Hearing (In America)My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents from Social Security that might explain what to... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments3 comments
Applying for Disability WebinarApplying for disability benefits can seem like an overwhelming ordeal. Coping with a rare disease can make the process feel even more stressful. There are forms to complete, questions to... By RareDisease.net Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
Grieving Loss in the Rare Disease CommunityRare disease communities provide a unique and much-needed benefit to their members. For many of us, it's through these communities that we connect with others with our same rare disease... By Jenny Jones4 min readBookmark for laterReactions 0 reactions Comments0 comments