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It was a great day at the Colorado State Capitol #rarediseaseday2020 with @ColoradoRare & @RareAction! #advocate #RareDiseaseWeek #CDKL5 #TogetherWeRise

CEO Dr. Scott Braunstein shares a message of gratitude to patients, families and advocates across the globe this #RareDiseaseDay:

“It is only through you and your families that we can remain an unstoppable force in advocating for those with rare diseases.”

Four hours after the baby was born, doctors came up to me and said “Your son is different”.

Introducing Raising Rare, a podcast that follows a father's journey as he looks for treatments for his son's ultra rare disease. #RareDiseaseWeek #RareDiseaseDay

https://medium.com/gpx4/baby-with-rare-gpx4-genetic-mutation-7d250a42efd9

We're proud to announce the winners of our inaugural BlueJeans Best-of-Breed Customer Awards! Congratulations to all of our winners! http://bit.ly/397ZyYT @EMDGroup @uofl @GlobalFund @amicusrx1 #videoconferencing #meetings

For every rare disease, there is a person behind the condition. See their stories: https://www.amicusrx.com/advocacy/patient-portraits/ #RareDiseaseWeek

Why do we sometimes have trouble paying attention?

Patterns of functional connectivity reliably predict when people were more or less focused on a task.

Read here 👉 https://zcu.io/An8R

#neuroscience #focus #research

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omar.fumagalli@cdkl5insiemeversolacura.it o chiamate il numero 3475607498
#allweneedislove #insiemeversolacura #cdkl5

Friend of Rare Disease Day 2020 - 29 Feb - CDKL5 Canada https://www.rarediseaseday.org/friend/2229#.XlbZVcsEDUE.twitter

We are proud to partner with @GlobalGenes to eliminate challenges facing #raredisease patients and their families. #RareDiseaseDay #CareAboutRARE

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