Tag: global genes

A total of 95 posts are filed under global genes
Rare Stories of Hope and Inspiration – Submit Yours Today
Thank you to all those who have submitted stories of hope and inspiration!  We’ve received many heartfelt stories from parents and… Continue Reading
Get a Global Genes Car Sticker – Simply Submit Your Rare Patient Story of Hope and Inspiration
We are looking for Patient Stories of Hope and Inspiration – to be shared with the world every day. Nothing can portray the fight, the… Continue Reading
Clinical Development Program in LAL Deficiency By Synageva
LAL Deficiency, a lysosomal storage disorder, has early and late onset phenotypes, also referred to as Wolman Disease or Cholesteryl Ester… Continue Reading
Cal-State Fullerton Students Champion RARE Disease
We are a group of five seniors at Cal-State University, Fullerton studying Communications – Public Relations.  As part of our capstone… Continue Reading
RARE Disease Congressional Caucus Meeting – We Need You To Ensure That It’s A Success
Help ensure the first Rare Disease Congressional Caucus Briefing is a success!  We want as many staffers to attend as possible to learn… Continue Reading
Your Invited! Regional Essential Health Benefits Sessions Sponsored by HHS
The Affordable Care Act ensures Americans have access to quality, affordable health insurance.  To achieve this goal, the law ensures plans… Continue Reading
Creating Hope Act Needs Your Quick Support!
It’s simple and takes less than a minute! The Creating Hope Act was introduced in the House two weeks ago to great success.  We now have… Continue Reading
Share Your Patient Story

Follow us on Twitter