GenomicsCollaborative
@genomicscollab
Designing The Future of Health Together. Join our efforts in collaborating towards scientific breakthroughs.
ID: 943569370172751873
http://www.genomicscollaborative.com 20-12-2017 19:50:43
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428 Followers
315 Following
FDNA Releases New Findings for Sanfilippo Syndrome Resulting from Genomics Collaborative Partnership Jonah's Just Begun Cure Sanfilippo Fdn #raredisease prweb.com/releases/2018/…
"Shining a Light on Undiagnosed Disease at @FDNA" Honored to be featured in this issue of RARE Revolution Magazine®! We thrive working alongside the great advocacy communities in #rare and #genetic disease!
Thanks The Boston Globe for featuring our work!
Thanks to Charles River Labs for inviting us to the #CRLWorldCon today to hear speakers like David Hysong (@Shepherd_bio) Preston Campbell (Cystic Fibrosis Foundation) Doug Albrecht (Jain Foundation) Martin Naley (myTomorrows) Owen Roberts American MedChem & more! #raredisease #genetics
"#Raredisease suffers from a leadership vacuum. Foundations are uniquely suited to fill that void." Dr. Albrecht (Jain Foundation) on making orphan diseases attractive to drug companies. #CRLWorldCon #pharma
"We have made pre-approval access a strategic compliment to #clinicaltrials. Helping that drug development process in the rare community to move those treatments forward with more patients & learn from the full intended patient population"- Martin Naley myTomorrows #CRLWorldCon
40 years ago, a University of Michigan chemist proposed a way to treat #Gaucher disease, a rare lysosomal storage disorder. James Shayman speaks to a packed house at #CRLWorldCon about how they brought their drug to market. #drugdiscovery #RareDisease
Closing out Day 1 at the #CRLWorldCon with Mike Porath, Founder & CEO, The Mighty. Thank you for sharing your story with us! #RareDisease #MightyTogether
Second day of #PatientAdvovcacy and education at the #CRLWorldCon with speakers from prionalliance Charles River Labs AFM-Téléthon Yumanity Odylia Therapeutics & EveryLife Foundation. Exciting examples of #rare and #Genetic community collaborations for #GeneTherapy & #PrecisionMedicine
Over the last five years, Sanford Research has taken a team approach to move the needle towards having effective treatments for #battendisease. Weimer Lab shares successes and hurdles at #CRLWorldCon.
"Because there is such a small population of #USP7 patients, my own daughter included, having a tool such as #Face2Gene trained to recognize this syndrome increases awareness and likelihood of an earlier diagnosis" - Bo Bigelow of Hao-Fountain Syndrome usp7.org/press-releases #rare
GenomicsCollaborative at @FDNA is celebrating 10 amazing moms in #raredisease advocacy. Congrats to Gina Szajnuk RUN Neena Nizar Neena Nizar Carri Levy Carri Levy Rene King of All Thinks Kabuki & Eden Lord of #TheRareFair! Read their stories: fdna.com/blog/moms-on-a…
Excited to be joining the over 800 registrations, representing over 250 rare diseases during the Global Genes 2018 Patient Advocacy Summit through their accessible livestream! #raredisease #2018GGSummit