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A total of 216 posts are filed under Awareness
Orioles Don Braille Jerseys as Team Honors National Federation of the Blind
Rare Daily Staff Players and coaches of the Baltimore Orioles will become the first team in American professional sports history to wear… Continue Reading
Rare Disease Foundation Announces First Global Registry for NGLY1 Deficiency
Rare Daily Staff The Grace Science Foundation, a non-profit working to cure the ultra-rare disorder NGLY1 deficiency, said it has created… Continue Reading
Video: A Fourth Grader Explains What It’s Like to Have Autism
George’s Yionoulis shared this video with his fourth grade classmates to help them understand his autism and why he behaves the way he… Continue Reading
Why Rare Disease Research Matters
Every year, there are so many different projects at fairs surrounding high profile diseases, such as various types of cancer, Alzheimer’s,… Continue Reading
Don’t Forget About the Adults
I am laying down thinking to myself why? So many whys to ask about. Why do I have a rare disease that nobody can treat? Why am I in so much… Continue Reading
Gotta Catch ‘Em All
I know more about Pokémon than I care to admit having raised three kids who are now adults. While I’m at a point in life where I’m… Continue Reading
Understanding Strength
By Jennifer The physician who came to see me happened to be a Persian Jew. After listening to my story and examining me, he diagnosed a… Continue Reading

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