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An honest and real discussion surrounding a
#raredisease diagnosis it feels like no one understands and the reason organizations like@_OurOdyssey_ exist.#CareAboutRare@TheMightySitehttp://ow.ly/XQkQ50xGWgB -
As experts in the field, Dr. Su and her colleagues have discovered never-before-seen
#PrimaryImmune disorders, including a genetic susceptibility to the common cold: http://bit.ly/GeneticsCold#CNNIAIDSymposium#CareAboutRare#RareDiseasepic.twitter.com/iVWrRl60dQ
Prikaži ovu nit -
Scientists have spotted a secret to Centronuclear Myopathies hidden in muscle cells. Learn more about this group of rare diseases http://bit.ly/2oJ7Mog
#myotubularmyopathy#antisense#XLMTM#MTM#CNM#CNM#CareaboutRare#raredisease#centronuclear#myopathy#cellularbiologypic.twitter.com/6LMl0JSQ1c
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The team at
@RadyGenomics is helping#raredisease patients find hope through#DNA#sequencing. https://www.npr.org/sections/health-shots/2019/10/28/773018205/fast-dna-sequencing-can-offer-diagnostic-clues-when-newborns-need-intensive-care?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social …#2019GGSUMMIT#CareAboutRare -
I founded
#Cookies4Cures to help my friend Mila who has#Batten. Science is complex. So are ethics. How do ppl decide how much to give to save the life of a friend, a family member, or a child they've never met?@stopbatten#ResearchIsHope#CareAboutRare https://nyti.ms/2OuL3ad -
Learn how on RARE Entrepreneur Bootcamp attendee is using what he learned at
#2019GGSUMMIT.#RareDisease#CareAboutRare https://www.cbc.ca/news/health/medical-fundraising-boot-camp-rare-disease-1.5292192 … -
"It is a great honor for this large international group of collaborators to be recognized for our many accomplishments over the last several decades.” Another congratulations to IMACS for their RARE Champion of Hope Award last month.
@NIEHS#CareAboutRare http://ow.ly/LM4e50wzIep -
Thank you
@people magazine for featuring Isabel’s story! She is a dear friend of mine.#SaveIsabel#RareDisease#PeopleMagazine#PeopleHelpingPeople#CareAboutRare https://people.com/politics/isabel-bueso-truth-real-story-2019-deportation-treatment/ … -
Awesome event filled with incredible humans. What a community.
#CareAboutRare https://www.msn.com/en-us/health/medical/folks-with-rare-diseases-find-support-at-liberty-science-center-expo/ar-BBVqT2G?srcref=rss&ocid=iehrs …@OvidRx -
Rare Disease affects 1 in 10 of us...babies, teens, adults, and even rock stars like
@peterframpton#RareDisease#CareAboutRare#cararediseasecaucushttps://www.cbsnews.com/news/peter-frampton-farewell-tour-will-be-his-last-singer-reveals-inclusion-body-myositis-diagnosis-in-cbs-this-morning-interview-2019-02-23/ … -
Powerful, courageous and beautifully written piece by the amazing
@SarahHogate on the importance of focusing on#raredisease. 1 out of 10 Americans has a rare disease and research often holds key insights for common diseases.#careaboutrare https://www.washingtonpost.com/national/health-science/i-have-a-rare-disease-research-on-such-illnesses-can-provide-insights-into-more-common-ones/2019/02/15/3d477852-141b-11e9-803c-4ef28312c8b9_story.html … -
Patients with rare disease get free access to life-saving wonder drug https://www.smh.com.au/national/patients-with-rare-disease-get-free-access-to-life-saving-wonder-drug-20181031-p50d6t.html …
#NERVEmber#GoOrange#CareAboutRare -
Husband & wife with
#neurofibromatosis type 1 raise awareness of the#raredisease. They wear "Just Ask" t-shirts to help educate the public & address misperceptions (including concerns it is contagious, which it is not). http://ow.ly/N48T30mvnQi#CareAboutRare -
Little boy from St. Louis with high fevers caused by
#raredisease seeks answers & potential treatments at@NIH, viewing@TheChildrensInn as a home away from home http://ow.ly/w01w30maaCX#CareAboutRare -
Congrats to
@spark_tx , the patients & families that participated in#clinicaltrials@US_FDA Approves first#GeneTherapy for#RARE form of childhood#blindness#CareAboutRare@GlobalGeneshttps://www.washingtonpost.com/news/to-your-health/wp/2017/12/18/fda-approves-first-gene-therapy-for-an-inherited-disease-childhood-blindness/?utm_term=.f90aa017155c … -
http://www.forbes.com/sites/judystone/2016/03/01/teen-advocates-lobby-and-inspire-on-rare-diseases-day/#2c03f59a1f96 … thank you so much
@DrJudyStone
everyone please read and share!!
#CareAboutRare#WeAreMore@globalgenes
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