Patient Advocacy Summit: What Will You Learn? Register Now.

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What if you could learn EVERYTHING you needed to know about being a patient advocate in just two days? What if you could learn how to be prepared, proactive, and productive in your efforts to better the lives of those with rare disease? What if […]

GlobalGenes, BIO Work Together to Present MIT H@cking Medicine June 26th

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Ever had a really great brainstorming session? When great minds work together, they can discover some pretty incredible things! That’s why Global Genes is so proud to be in a pioneering partnership with BIO for the 4-hour, Idea Hack, hosted by MIT H@cking Medicine, on Thursday, June […]

The Alternating Hemiplegia of Childhood Foundation Announces Workshop 6/27

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The Alternating Hemiplegia of Childhood Foundation (AHCF) is proud to sponsor the scientific workshop titled “Achieving Consensus on Definitions and Outcomes for Natural History Studies and Clinical Trials in ATP1A3 Related Disorders.” Co-chaired by Dr Kathryn Swoboda and Dr Allison Brashear, the full day workshop will take […]

The Batten Disease Support and Research Association Announces 2014 Annual Family Conference

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The Batten Disease Support and Research Association‘s Annual Family Conference is in Columbus, OH, July 24-27, 2014. This conference hosts families, medical specialists, caregivers and allied health professionals for networking, education, instruction, and patient empowerment. The conference features research presentations, scientific posters, family meetings, topical […]

Lynch Syndrome International Conference and Family Reunion

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Submitted by: Linda Bruzzone Lynch Syndrome International and Creighton University Health Services Education are pleased to invite you to attend the Lynch Syndrome International Conference and Family Reunion on June 21, 2014, in Buena Vista Palace, Orlando, Florida. Presenting a hands-on, one day educational event […]

A Year as Champions: Dylan and Jonah

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We were so honored to have both boys at our 2013 Champions of Hope Tribute event for their fantastic contribution to rare disease education through their book “Chocolate Bar.” We asked their parents what a year as Champions of Hope meant to them and where they […]

Can You Tell Your Rare Disease Story in Six Words? Enter and Win.

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“For sale: baby shoes, never worn.” It was a six word story that Ernest Hemingway wrote that changed the idea that a great story couldn’t be a brief one. We find that there are many great six word stories out there—and we want to hear […]