onevoice by rareLife @onevoiceworld
Encouragement, Knowledge & Collaboration in Rare Diseases: onevoice is a technology solution brought to the rare disease community by @rareLifetalks onevoice.world Westport, CT Joined March 2015-
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The magical power of community- a must watch video...
The magical power of community- a must watch video...
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onevoice by rareLife retweeted
Congratulations to all the awardees including our friends and colleagues @PublicHlthLwyr @KristinSmedley ! @GlobalGenes #careaboutrare globalgenes.org/rare-champion-…
onevoice by rareLife retweeted
#curecdkl5 #cdkl5Alliance2019conference A great weekend with so many lovely families, professionals and pharmaceuticals companies. Without their support we would not have been able to have this great conference @MarinusPharma @TakedaPharma @OvidRx @PTCBio @ultragenyx @amicusrx1
onevoice by rareLife retweeted
It’s World Sickle Cell awareness day and @oneSCDvoice we support @SCDAAorg that Sickle Cell Matters! #WorldSickleCellDay2019 #hope @rarelifetalks
onevoice by rareLife retweeted
I love this guy and admire his fortitude, mission and tenacity - keep up the great work and see you at the @MillionBike ride Saturday! @RASopathiesnet
I love this guy and admire his fortitude, mission and tenacity - keep up the great work and see you at the @MillionBike ride Saturday! @RASopathiesnet
onevoice by rareLife retweeted
If you buy a nutraceutical "containing #CBD" you might find: - zero CBD - the promised quantity of CBD - 23 times more CBD than in the label 😮 - 45% THC 😱 And high-level CBD can cause liver injury. 👆The FDA meeting should warn consumers of all this nutraingredients-usa.com/Article/2019/0…
onevoice by rareLife retweeted
🧬 We are all mutants: - We all have ~40 spontaneous mutations not present in our parents - This is how evolution happens - Some times a mutation messes up a gene function - That is a genetic #RareDisease - Mutation location is pure chance, not your fault massgenomics.org/2015/07/insigh…
onevoice by rareLife retweeted
Exciting news for the SMA community. FDA approves innovative gene therapy to treat pediatric patients with spinal muscular atrophy, a rare disease and leading genetic cause of infant mortality fda.gov/news-events/pr…
onevoice by rareLife retweeted
Today is #undiagnosedDay, a day to raise awareness for the #undiagnosed #raredisease community. What is an undiagnosed disease? According to @UDNconnect, it is a medical condition without a known cause despite a lot of evaluation. Retweet to spread the word!
To do otherwise is a bit patronizing.
To do otherwise is a bit patronizing.
onevoice by rareLife retweeted
Crazy anecdote at #WODCEurope! In Europe after gene therapy a patient is considered a GMO and cannot be “exported” out of a country without approval of the department of agriculture! So you need treatment sites in each country even if single lifetime injection 🤦♂️
onevoice by rareLife retweeted
As the School Year Begins, Please Talk to Your Kids About Disabilities themighty.com/2018/08/please… "children are rarely taught how to be open to disabilities and that it’s OK to become friends with someone no matter who they are or what disability they might have."
onevoice by rareLife retweeted
Registration is now OPEN for the 10th Annual rideATAXIA Philly on October 14, 2018❗️ Come out and enjoy scenic routes 🏞 and delicious food🍴prepared by @Outback @Carrabbas and @BonefishGrill ☺️ Check it out 👀 or get registered ! Visit 👉 rideataxia.org/philly
onevoice by rareLife retweeted
Thanks to the tremendous efforts of Florida's advocacy community, today the state's Advisory Committee voted to begin screening for Pompe and MPS I. For continued updates on this important development, be sure to subscribe to our newsletter, linked below. ow.ly/YTmj30lxYG5
onevoice by rareLife retweeted
Thank you to Shire Pharmaceuticals for your sponsorship of the 2018 RareVoice Awards. RDLA applauds your recognition of those who make a difference in the rare disease community. ow.ly/DGIQ30kUsNG
Rare diseases mentioned for the first time at WHO 71st World Health Assembly @rarediseasesint buff.ly/2IIHsDR
Do you remember when you joined Twitter? I do! #MyTwitterAnniversary
“they’re going feel like oneSCDvoice is better than Facebook.” buff.ly/2IJ9ISR
Had a great time at #Patients2018
Had a great time at #Patients2018
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