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 Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
What a Caregiver Means to MeI talked with an old friend from high school who just found out he has a rare disease about how much our partners and caregivers mean to us. First, we... By Frank Rivera4 min readBookmark for laterReactions 0 reactions Comments2 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 Team3 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 Comments2 comments
Applying for Disability Webinar (EVENT POSTPONED)UPDATE: Due to unforeseen circumstances, this event has been postponed. We will update this page once a new date is finalized.To stay in the know about this and future events... By RareDisease.net Team1 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
5 Tips for Practicing Self-Care With a Rare DiseaseAs a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a day at the spa could wash away my... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
Keeping Your Medical Records OrganizedKeeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With organized medical records, you can track changes and... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
Terms to Know When You Have Adult-Onset Still’s DiseaseEven if you have lived with adult-onset Still's disease (AOSD) for years, new terms can come up often. Whether you are new to the AOSD world or wanting to understand... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
Surprise! It's Rare Disease Day!It's that special day of the year again. You know the one. The day when all of your friends bestow many a gift and regale you with all the knowledge... By Shawn Decker2 min readBookmark for laterReactions 0 reactions Comments0 comments
When Illness Calls: A Tale of One Rare DiseaseAs a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with narcolepsy is slow, with at least 2 scheduled... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Impact of Rare Disease on SiblingsA rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
How Is Adult-Onset Still’s Disease Treated?In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins cause too much inflammation. Over time, this can... By Editorial Team4 min readBookmark for laterReactions 0 reactions Comments0 comments
When We Are Eager to Undergo Medical TestsMedical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed. This is likely most understandable amongst the rare... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Webinar: Emergency Preparedness WorkshopLiving with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make visits to the emergency room, urgent care center... By RareDisease.net Team1 min readBookmark for laterReactions 0 reactions Comments2 comments