'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...But then I had a diagnosis experience that started in 2022 that I've never had before.... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Managing Healthcare Expenses...Managing a chronic health condition can take a financial toll on you and your family.... By Editorial Team 4 min readBookmark for later
Rare Disease International...However, doing so is like a sea lion trying to relate to a shark.... By Tatiana Corbitt3 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Disease Statistics...This is about 1 in 10 Americans. The European Union defines a rare condition as one that “affects no more than 1 in 2000 people.”... By Editorial Team 2 min readBookmark for later
Was I Just Soft? A Reflection on Getting a Diagnosis...But I was a dancer and proud of my flexibility, so I would explain it: "Oh, it's because I'm a dancer."... By Annie-Danielle Grenier2 min readBookmark for laterReactions 0 reactions Comments0 comments
When Illness Calls: A Tale of One Rare Disease...However, in early December 2022, I had my first shingles outbreak. I felt somewhat recovered for a few days in January 2023.... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Voting with a Rare Disease...Prepare for a wait. Do not be caught unprepared if your polling place has a long line.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...After a good chunk of time, I decided it was time to make a change. For whatever reason, a rotation schedule had never crossed my mind before.... By Alex Gaudlap4 min readBookmark for laterReactions 0 reactions Comments0 comments
Pompe Disease: What You Need to Know...They have either no GAA at all or a limited amount. Without GAA, their bodies cannot break down glycogen, so it builds up.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Understanding Clinical Trials...A questionnaire or a survey that asks questions about a new drug or the side effects of a surgery are examples of observational studies.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Rare Versus Under-diagnosed Diseases...Thyroid eye disease is categorized as a rare disease.... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is Caregiver Burnout?...While being a caregiver for a loved one may be necessary and can be rewarding, burnout is common.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy...A month later, a long seizure that required transportation via ambulance and multiple doses of emergency medication scared us all.... By Alex Gaudlap5 min readBookmark for laterReactions 0 reactions Comments0 comments
Genetics 101...A genetic disorder is a condition caused by an abnormality in DNA.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Dwayne Wilson...Pompe, it's in my DNA, I was diagnosed with the Rare Inherited Genetic Muscle Weakness Disease when I was 50 yrs old in Nov, 2018.... By Editorial Team 1 min readBookmark for later
How Do I Find a Specialist for My Rare Disease?...Finding a specialist who can guide you on your journey is key.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Medical Review Board...She has been a practicing nurse since 2009 and helped establish the first headache medicine program at Hartford HealthCare (HHC) in 2015.... By Editorial Team 6 min readBookmark for later
Workplace Considerations...An accommodation makes it possible for a person with a disability to complete their job duties by adjusting their work surroundings.... By Editorial Team 3 min readBookmark for later
