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Powerful video about how our first #NGLY1 Deficiency patient was found, and the incredible Might family (@mattmight @bertrandmight , founders of NGLY1.org) who work tirelessly to help others affected by NGLY1 and #raredisease
facebook.com/freethinksuperh…
NGLY1.org retweeted
📣 The Frontiers in CDG Consortium (FCDGC) releases updated guidance for CDG patients during the COVID-19 pandemic. To directly access the statement, please click on the link below. 👇
cdgcare.org/wp-content/uploa…
Research update on #NGLY1Deficiency - Significance of #NGLY1 in #melanoma cells suggesting that targeting NGLY1 represents a novel anti-melanoma strategy.
ow.ly/ILbt30mFPSj
The more research we put into #NGLY1 and #RareDisease , the more we will find that these diseases may hold the key to more common diseases. #NGLY1deficiency
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NGLY1.org retweeted
Precision Medicine! @mattmight @ngly1org. I have so much respect for what Christina and Matt have accomplished. Truly amazing super humans!
The part where it says "dramatic music" did make me giggle though! :D
#PrecisionMedicine facebook.com/freethinksuperh…
NGLY1.org retweeted
“Science is where you turn when you have to do the impossible.” facebook.com/freethinksuperh… #RareDisease #GCchat @mattmight @ngly1org
NGLY1.org retweeted
.@mattmight of @ngly1org talks about search for answers for his son, 1st to be diagnosed with NGLY1 deficiency, efforts to repurpose medicines which have kept him seizure-free & potential of #precisionmedicine for #raredisease patients ow.ly/xy6Q30kmQP3 via @freethinkmedia
NGLY1.org retweeted
I told our story. 14 years of a diagnostic odyssey before a diagnosis of an ultra-rare disease (NGLY 1 Deficiency) thanks to sequencing! @illumina #genomics @ngly1org @gracescience
Wonderful article written in the popular Danish publication, @ingdk, on #NGLY1 and the Might's family journey. ing.dk/artikel/soennens-genf…
Meet 13-year-old Marc with the most infectious smile from Barcelona, Spain <3
ngly1.org/ngly1-family-story… #NGLY1
Meet Christina Lam, M.D., one of the leading researchers for #NGLY1Deficiency. We are thrilled to have her on our NGLY1.org team!
ngly1.org/interview-with-chr…
#NGLY1
We are pleased to announce and welcome Matt Fox to our Board of Directors. Matt brings years of experience in finance, biotech, drug development and personalized therapeutics to NGLY1.org. ngly1.org/matthew-fox
#raredisease #ngly1
NGLY1.org retweeted
@mattmight @UABNews @uabprecisionmed @ngly1org Fascinating and inspiring story today on the NGLY1 deficiency journey and #PrecisionMedicine. #medicine #ComputerScience
NGLY1.org retweeted
The model to follow...RT @ngly1org: There is #hope on the horizon for #NGLY1 families! Learn more about our research initiatives at ngly1.org/research #raredisease
The story of how #NGLY1 was discovered in its first patient is highlighted by the @NHGRI in its 15 stories celebration! Congratulations @bertrandmight @mattmight! ow.ly/mNHt30jtRwV
Meet adorable 2-1/2 year old Willow and her #NGLY1 family from Manitoba, Canada. <3 ow.ly/Usq830jl46y #raredisease #familystories
There is #hope on the horizon for #NGLY1 families! Learn more about our research initiatives at ngly1.org/research #raredisease
NGLY1.org retweeted
Moving, Educational & Enlightening Presentation on The Power & Promise of DNA Sequencing in #RareDisease Diagnosis youtube.com/watch?v=GP-EpTe0… #ITRTG #genomics #DataScience #genetics #SNRTG #OpenScience #BigData #science #technology #meded @bertrandmight @mattmight @ngly1org
