A Caregiver's Guide to Explaining a Rare Disease Diagnosis...We're more than a diagnosis, and it's time to fight for our rights....reactionscomments
What is a SWAN?...A child with a SWAN may one day receive a precise diagnosis. But many continue to...reactionscomments
Was I Just Soft? A Reflection on Getting a Diagnosis...But I was a dancer and proud of my flexibility, so I would explain...reactionscomments
Participating in a Focus Group as a Rare Disease Patient...It truly was a fascinating experience....reactionscomments
Finding Joy While Raising a Child With a Rare Disease...It's hard to remember what my life was like before having a child with a rare disease....reactions2comments
'It Takes a Village...' Building a Supportive Rare Disease Village...In my own experience of raising a child with a rare disease, my village appears irregularly....reactionscomments
The Power of a Name: Why a Rare Disease Diagnosis Matters...While medical professionals can explain a lot of what to expect following a procedure or starting...reactionscomments
Working Remotely as a Caregiver...As a caregiver, taking a "me break" is extremely important. Regardless of when you take this...reactionscomments
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 reactionscomments
Parental Partnership: Supporting Families With a Child Affected by a Rare Disease...a child with a rare disease....reactionscomments
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....reactionscomments
Managing Overstimulation as a Parent...I prepare as much as I can for the next morning before bed: As a...reactionscomments
Voting with a Rare Disease...Do not be caught unprepared if your polling place has a long line....reactionscomments
Caring for a Child With a Rare Disease: Vacations? What Are They?...– the way I felt as a child during a vacation....reactions1comment
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....reactionscomments
How to Be a Good Friend to Someone Living With a Rare Disease...A sure way to destroy a relationship is through unresolved resentments, which act as reactions4comments
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....reactions4comments
What a Caregiver Means to Me...But I don't agree with that at all. Why is there a certain limit to being...reactions4comments
Personal Grooming With a Rare Disease...Living with a rare chronic disease isn't for the faint of heart....reactionscomments
