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
How I Gradually Changed My Relationship With Medical PTSD...Rather, through counseling beginning as a teenager and a lot of continuing effort on my part.... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Role of Genetics in Rare Diseases...Of those, 8 out of 10 have a genetic cause.... By Editorial Team 3 min readBookmark for later
Pompe Disease and Genetics...This protein is called acid alpha-glucosidase (GAA). GAA plays a role in breaking down a complex sugar called glycogen into smaller sugar molecules.... By Editorial Team 3 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
Theresa Oylear...Theresa is also a passionate advocate for mental health.... By Editorial Team 1 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
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to Resilience...with a rare disease.... By Elle Cole4 min readBookmark for laterReactions 0 reactions Comments0 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... By Dusty Terrill5 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
Lessons Learned in Navigating Medical Debt...If needed, when dealing with a debt collector, you may be able to request a third-party arbitrator to assist with settling a dispute or you could hire... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments1 comments
10 Reasons Why Students With a Rare Disease Should Consider a 504 Plan...A 504 plan can be a protection to keep a student in school.... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
Which Specialist Needs to Know Your Symptoms? All of Them....I shared in a previous article about my medical testing journey to determine the cause of my chronic vomiting that started in July 2022.... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Fighting Misconceptions Can Save Lives: Rare Disease Surveillance...A common misconception about familial adenomatous polyposis (FAP) is that it's a death sentence.... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
What to Expect During a Disability Hearing (In America)...I’ve been working tirelessly on this for approximately 2 years. Sometimes it feels like a second child.... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments3 comments
Dusty Terrill...Dusty was diagnosed with hyper IgE syndrome AKA Job's syndrome, in 2015 after pneumonia led to both lungs collapsing.... By Editorial Team 1 min readBookmark for later
Rare Diseases and Preparing for an Emergency...And was that third surgery in 2021 or 2022?... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
Holidays and Rare Diseases...Carrying a printed copy can help if a TSA agent is not aware of disability accommodations provided per TSA guidelines.... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments1 comments
Developing Elevator Pitches for Rare Disease Advocacy...For an elevator pitch, identify the most important thing for a stranger to know about a rare disease and highlight that in 1 sentence – 2 at... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
