Planning a Vacation With a Rare Disease...We'd be going to a small town in a different country.... By Jessica Hanson4 min readBookmark for laterReactions 0 reactions Comments2 comments
Keeping Your Family Connected When Raising a Child With a Rare Disease...Raising a child with a rare disease reshapes a family's dynamics in profound ways.... By Elle Cole3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 By Annie-Danielle Grenier2 min readBookmark for laterReactions 0 reactions Comments0 comments
Participating in a Focus Group as a Rare Disease Patient...It truly was a fascinating experience.... By Gina Miller3 min readBookmark for laterReactions 0 reactions Comments0 comments
Coordinating Care With a Rare Disease...In fact, my symptoms were presenting a straightforward case of severe type 1 narcolepsy.... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
A Journey to My Authentic Self...I wanted my mental and emotional health to be a priority.... By Dusty Terrill2 min readBookmark for laterReactions 0 reactions Comments0 comments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy...Within the first few days of being on this medication, he had a seizure that resulted in us getting a CT... By Alex Gaudlap5 min readBookmark for laterReactions 0 reactions Comments0 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
What to Expect After a MAC Diagnosis...If a germ changes to the point where a drug does not work on it anymore, this is called drug resistance.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Founding a Rare Disease Non-profit: The Importance of Advocate Self-care...Take a walk, take a bath, watch your favorite show or movie, call and talk to a friend or family member, or... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Mental Health and Having a Rare Disease Is a Double-edged Sword...Having a mental illness is a double-edged sword. If you say too much, you're a complainer.... By Frank Rivera3 min readBookmark for laterReactions 0 reactions Comments0 comments
Living With a Rare Kidney Disease...Living with a chronic condition like a rare kidney disease can take a toll on your mental and emotional well-being.... 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 By Alex Gaudlap4 min readBookmark for laterReactions 0 reactions Comments0 comments
Working Remotely as a Caregiver...As a caregiver, taking a "me break" is extremely important. Regardless of when you take this break, it is essential to... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
What Makes a Rare Disease Patient Advocate?...We are constantly trying to create awareness and aim to make the world a better place to live with a rare... By Ella Balasa2 min readBookmark for laterReactions 0 reactions Comments0 comments
Personal Grooming With a Rare Disease...Living with a rare chronic disease isn't for the faint of heart.... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
What is a SWAN?...A child with a SWAN may one day receive a precise diagnosis. But many continue to live in limbo.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
What to Expect During a Disability Hearing (In America)...Share your story or drop a question in the comment section below.... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments3 comments
What It Means to Celebrate Moments as a Rare Disease Family...Every step forward, even a tiny one, moves us closer to a better place. At least until we shift backward, but that's okay, too.... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Yes, You Can Travel as a Dialysis Patient...While having this a letter from your dialysis team shouldn't be necessary, it can help a lot.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
