Patients & Caregivers
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Global Genes Patient Summit 2017 | Page 2
Tribute to Champions of Hope 2017 - The Blue Carpet
Some of the people interviewed were Gavin Stevens, Sparsh Shah, John Crowley, Madison McLaughlin, Kevin Chandler, & Stephanie Rice
An App to Improve Patient Participation in Clinical Trials
We talked with Komathi Stem of monARC Bionetworks about their Apps that make it easier for patients to participate in clinical trials.
A Paradigm Shift in Clinical Trials is Occurring
We spoke with Kent Thoelke of PRA Health Sciences about how they are changing the way patients are involved in clinical trials.
A Recap of the Global Genes Tribute to Champions of Hope Event
Gavin Stevens, Sparsh Shah, Andrew McMahon, Stephanie Rice, Madison McLaughlin and others helped make the night a celebration
Some1 Like You
Some1 Like You is a means for rare and undiagnosed individuals to be matched with people with similar conditions.
RARE Champions of Hope
At the Global Genes' RARE Champion of Hope Awards, Madison McLaughlin, Jillian Rose Reed, Jim O'Heir presented awards.
Photography Book Focused on Rare Diseases
We talked with photographer Karen Haberberg about the book she developed detailing 29 families affected by rare diseases.
Doll Kind: Empowering Children to Spread Kindness
Makayla Allison, founder of Some1 Like You talks about Doll Kind, an organization which makes dolls that encourage its owners to be kind.
How to Participate in the Rare Genomes Project
At the Global Genes Summit, we talked with Hayley Brooks, MS, program lead for Rare Disease Genomics at the Broad Institute in Cambridge, MA.
Speakers Announced for 2017 Global Genes Summit
Speakers scheduled for the 2017 Global Genes Rare Patient Advocacy Summit are a who's who of the rare disease community.
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