Rare Disease Report

Global Genes Patient Summit 2017 | Page 2

Some of the people interviewed were Gavin Stevens, Sparsh Shah, John Crowley, Madison McLaughlin, Kevin Chandler, & Stephanie Rice
We talked with Komathi Stem of monARC Bionetworks about their Apps that make it easier for patients to participate in clinical trials.
We spoke with Kent Thoelke of PRA Health Sciences about how they are changing the way patients are involved in clinical trials.
Gavin Stevens, Sparsh Shah, Andrew McMahon, Stephanie Rice, Madison McLaughlin and others helped make the night a celebration
Some1 Like You is a means for rare and undiagnosed individuals to be matched with people with similar conditions. 
At the Global Genes' RARE Champion of Hope Awards, Madison McLaughlin, Jillian Rose Reed, Jim O'Heir presented awards.
We talked with photographer Karen Haberberg about the  book she developed detailing 29 families affected by rare diseases.
Makayla Allison, founder of Some1 Like You talks about Doll Kind, an organization which makes dolls that encourage its owners to be kind. 
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 scheduled for the 2017 Global Genes Rare Patient Advocacy Summit are a who's who of the rare disease community.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.