#Rare Is...


Patients describe what #Rare is for them.

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picture with words: The invisible difference manifesto

The Invisible Differences Manifesto

I’m part of a group of amazing parents and children; people bonded by diagnoses — most you’ve probably never heard of. Many disabilities, differences and illnesses are not easy to identify in people we may know or meet. In a world where kids think they have to keep their invisible differences hidden, we disagree.  More [...]
Copy of bill with statement "This is not a bill."

Opening a Health Bill After My Child's Hospital Stay

One weekend. $32,000 in one weekend. Anxious eyes scan from $32,000 to the bottom account balance you may owe. “This is not a bill” it says. But the weight has already jumped into your stomach. The statement is the harbinger of the bill, the great gust of wind that slams and bounces the screen door [...]
charlie gard and dad

After a Lengthy Legal Battle, Charlie Gard Has Died

After a lengthy legal battle, Charlie Gard, the U.K. infant whose parents fought for him to come to the U.S. for an experimental therapy, died on Friday. Earlier this week, after months of petitioning multiple British and European courts, Gard’s parents, Chris Gard and Connie Yates, ended their petition after the U.S. physician reviewing Gard’s case said it [...]
man and woman relaxing on their couch at home in front of a fireplace

Making Special Occasions 'Hallmark-Worthy' When You Have a Rare Disease

I love celebrating special occasions. I’m a real “Hallmarks moment” kind of girl. Always have been and I suspect I always will be. Cakes, balloons, lots of presents and good food. I especially love making the person who is celebrating their special day feel like they are the most important and loved person in the [...]