“The game changers in #raredisease are the people in this room & millions around the world like you” @peter_pcg #2016GGSummit
The biggest holiday in patient advocacy is here! And day one of the 2016 Global Genes Patient Advocacy Summit brought some powerful speakers, insightful audiences and a sense of community that’s hard to come by when you’re a rare patient, caregiver or clinician.
We took on the topics of care and support, the patient’s role in drug discovery and pre-clinical tools, and what you need to build as a disease community. Our presenters took questions from the participants and others told their personal stories.
Couldn’t attend this year? It was a good thing you could watch the entire day unfold through RareUniversity.com where livestreaming of the day’s events took place. Today, the second day of the summit, will also be streamed through the same website for your viewing pleasure!
Let’s take a look at what some people were saying about this year’s event so far:
@GlobalGenes @LoraDeming @PRAHSciences I hope…my work today helps my children and grandchildren tomorrow #2016GGSummit
— Tom Weiser (@WeiserTom) September 23, 2016
Our journey of hope… Helping Hands for GAND!@GlobalGenes @gatad2b #2016GGSummit #raredisease pic.twitter.com/RcSMXUBdqM
— Mindy Youngs (@MindyYoungs) September 23, 2016
Great day @GlobalGenes #raredisease summit. Grateful for my care w/ Dr. Julia Kharlip @PennMedicine #2016GGSummit@KickCushings pic.twitter.com/iovINLgSoC
— KickCushings (@KickCushings) September 23, 2016
This is a huge for the patient. Seeing value in the patient and that they have to say! #2016GGSummit https://t.co/QaMsDYQm2p
— Ross (@Rossco006) September 23, 2016
Today I got to meet some incredibly inspirational people. So happy to be at the #2016GGsummit ! pic.twitter.com/YbLVMsv17H
— Madi Vanstone (@MadiVanstone) September 23, 2016
“The earlier you know the problem the better you can manage it” – Dr. Philip Reilly #2016GGSummit
— RPASF Inc. (@RPASFInc) September 23, 2016
Ready for day two? We’ll see you there!

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