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A total of 102 posts are filed under Living
Parent Advocates: What’s Your Rare Secret?
The Mighty recently released a powerful video talking about what rare parents want to say, but often keep secret. The inspiring video… Continue Reading
SCOPE on the Story of Carrie Ostrea: How a Mom Became a Rare Disease Advocate
The team here at Global Genes has had the opportunity to work with Carrie Ostrea for many years. Her service for our organization and in the… Continue Reading
Educated Caregivers: A Game Changer in Rare Disease
By Anjli Venkateswaran (SOURCE)   Scientists need to see who they are fighting for. Families walking the journey with critically ill… Continue Reading
NFL Player Struggles with Complex Regional Pain Syndrome (CRPS)
(SOURCE) After just two days around the Seahawks, Tammy Jones is all in. “I love the Seahawks family already. I feel like I’m leaving… Continue Reading
Horizon Pharma plc Launches RAREis™ Campaign Elevating Faces of the Rare Disease Community
Horizon Pharma plc (NASDAQ:HZNP), a biopharmaceutical company focused on improving patients’ lives by identifying, developing, acquiring… Continue Reading
Colorado Sisters to Present Science Project On Their Own Rare Disease
SOURCE Nina Felch’s classmates at Holmes Middle School didn’t know she has a debilitating genetic disorder until last year, when as a… Continue Reading
A Rockstar, Big Pharma, And an Advocacy Group Unite!
Missing out on important life events is par for the course in many chronic illnesses. Patients are sometimes forced to bail on family and… Continue Reading