The Basics Name: Anne Bruns Title: Sponsor Chair Organization: Utah Rare Disease focus: Coalition for rare disease organizations and stakeholders within Utah and surrounding states. Headquarters: Salt Lake City. How did you become involved in rare disease: My son was diagnosed in January of 2013…Continue Reading
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Rare Leader: Gina Szajnuk, Co-founder and Executive Director of Rare and Undiagnosed Network
March 2, 2018 by Leave a Comment
The Basics Name: Gina Szajnuk (pronounced Zanik) Title: Co-founder and Executive Director Organization: Rare and Undiagnosed Network (RUN) Disease focus: Undiagnosed rare disease, but I also focus on all rare diseases. Headquarters: Park City, Utah How did you become involved in rare disease: I am…Continue Reading
RARE Webinar: Building the Bridge Between Foundations and Industry
Recorded Webinar/ Download Slides Are you a foundation looking for an industry partner? How about a biotech/pharma company looking to know about your patient community? This can be a tough gap to fill between these two worlds. How do you start? Who do you…Continue Reading
Girl with Parkes Weber Syndrome Deliver Message on Body Acceptance
July 22, 2015 by Leave a Comment
A Canadian teen with a rare disease that causes one leg to permanently swell to double its size has captured the Internet’s attention for her positive body image. Isa-Bella Leclair, 19, of New Brunswick, Canada, was born with Parkes Weber syndrome, a genetic disorder that…Continue Reading
2015 RARE Champion Of Hope Nominees
Global Genes™ would like to congratulate the following 2015 RARE Champion of Hope Nominees. These individuals and organizations have been recognized by their peers because of their extraordinary efforts in Advocacy, Science, Medical Care and Treatment, and Collaborations in Science. All of the 2015…Continue Reading
Atypical Hemolytics Uremic Syndrome (aHUS) Parents Attend Meetups
April 9, 2015 by 1 Comment
Fourteen meetups for Atypical Hemolytic Uremic Syndrome (aHUS) will take place this year. There is an average of about 30 attendees per meeting. From Durham to Tampa and Pensacola, the meetups will take part all across the United States so parents and patients are sure…Continue Reading
Our “Labeled” Child’s Name is Simon: Fighting for Treatment
April 14, 2014 by 1 Comment
My name is Sheryl Crosier and most importantly, I’m Simon’s mom. I am also Simon’s voice and the voice of our most vulnerable children. The lives of children, regardless of the diagnosis or syndrome, possess inherent dignity and value and deserve the best care. Our…Continue Reading
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