GenomicsCollaborative @genomicscollab
Designing The Future of Health Together. Join our efforts in collaborating towards scientific breakthroughs. genomicscollaborative.com Boston, MA Joined December 2017-
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Excited to be joining the over 800 registrations, representing over 250 rare diseases during the @GlobalGenes 2018 Patient Advocacy Summit through their accessible livestream! #raredisease #2018GGSummit
@genomicscollab at @fdna is celebrating 10 amazing moms in #raredisease advocacy. Congrats to Gina Szajnuk @rareundiagnosed Neena Nizar @NeenaNizar Carri Levy @dsproducer Rene King of All Thinks Kabuki & Eden Lord of #TheRareFair! Read their stories: fdna.com/blog/moms-on-a…
"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" - @bobigelow of @FoundationUSP7 usp7.org/press-releases #rare
A SUCCESSFUL OUTCOME for a #raredisease community of less than 40 known cases. A research collaboration between @FoundationUSP7 and @fdna's Face2Gene technology just produced a facial phenotype for USP7. See the results here: usp7.org/press-releases #rare #genetics #research
Over the last five years, @SanfordResearch has taken a team approach to move the needle towards having effective treatments for #battendisease. @DrJWeimer shares successes and hurdles at #CRLWorldCon.
Second day of #PatientAdvovcacy and education at the #CRLWorldCon with speakers from @prionalliance @CRiverLabs @Telethon_France @Yumanitytx @OdyliaTx & @EveryLifeOrg. Exciting examples of #rare and #Genetic community collaborations for #GeneTherapy & #PrecisionMedicine
40 years ago, a @UMich 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, @TheMightySite. Thank you for sharing your story with us! #RareDisease #MightyTogether
"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"- @martinnaley @myTomorrows #CRLWorldCon
"#Raredisease suffers from a leadership vacuum. Foundations are uniquely suited to fill that void." Dr. Albrecht (@JainFoundation) on making orphan diseases attractive to drug companies. #CRLWorldCon #pharma
Thanks to @CRiverLabs for inviting us to the #CRLWorldCon today to hear speakers like David Hysong (@Shepherd_bio) Preston Campbell (@CF_Foundation) Doug Albrecht (@JainFoundation) Martin Naley (@myTomorrows) Owen Roberts @americanmedchem & more! #raredisease #genetics
Thanks @BostonGlobe for featuring our work!
Thanks @BostonGlobe for featuring our work!
"I wasn’t ready to have the family spend money on yet a third test without some degree of confirmation that we were on the right track.” Doctor uses facial analysis app on #undiagnosed patient, reducing cost of expensive genetic testing. Read more: smithsonianmag.com/innovation/app…
"Shining a Light on Undiagnosed Disease at @fdna" Honored to be featured in this issue of @RareRevolutionM! We thrive working alongside the great advocacy communities in #rare and #genetic disease!
Did you miss our webinar last week on how #patients, #patientadvocates, #researchers, #clinicians, #labs, life science companies and #publichealth officials can get involved in new #genetic disease research? Watch the recap video here: youtube.com/watch?v=9bxk1u…
Interested in learning about the Genomics Collaborative? Join us for a webinar starting at 2PM EST to learn how patients and #PatientAdvocacy groups can get involved in new research! fdna.zoom.us/webinar/regist… #raredisease #genetics #research #Medical #patients
Join us 7/11 for a webinar with @fdna and @ThinkGenetic featuring Dr. Karen Gripp, Dr. Cara O’Neill, Ilana Jacqueline and moderated by Dawn Laney discussing the #GenomicsCollaborative - how #AI & #tech are advancing #PrecisionMedicine: ow.ly/mzR930kBptl
Our team is heading out to #ESHG2018! Will we see you in Milan? Stop by booth #338 and say hello! We want to know what diseases is YOUR biggest priority. Learn more about our Face2Gene technology and let us know if you'd like to be partners in a new collaboration!
We are excited to announced a new study between @genomicscollab & @bSynGAP to learn more about #SYNGAP1. Are you a Syngap patient? Submit your case here: tinyurl.com/ya9yfeld #raredisease #Research #Studies #FacialAnalysis #NextGenerationPhenotyping #Genetics
FDNA Releases New Findings for Sanfilippo Syndrome Resulting from Genomics Collaborative Partnership @JJB4CURE @CureSanfilippoF #raredisease prweb.com/releases/2018/…
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