RareDisease

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Best tweets:

ANE International 20/05/2018 10:56
Some Doctors will admit they don't know it all when it comes to #raredisease and work with you. Some won't aneinternational.org/ane/put-your-b ig-pants-on/   … #ANEmeme #campaign to raise #awareness on #ANE w #humour! @22Q11_Ireland @ataxiaandme @RackerbyAmanda @CDG_Portugal @PittHopkinsUK @thetinman_org,
http://pic.twitter.com/TNkPgQFQVV
topsy
On one of Massimo Damiani's last days at school he joined his classmates on stage to perform a Christmas-themed Hokey Pokey. He often grew impatient at such events. But this time he could not stop smiling. Massimo's mother Sally had shot a video of the ...
Yoni Maisel. 20/05/2018 07:05
Pioneering (In-The-Womb) Treatment for a #RareDisease and LIFE, Two Years On http://www. dailymail.co.uk/health/article -5745377/Twins-babies-treated-genetic-disease-WOMB-thriving.html   … #ITRTG #innovation #inspiration #SNRTG #BigData #science #genetics #genomics #biotech #technology #SciComm
http://pic.twitter.com/Ho8TDQUtrv
Pioneering (In-The-Womb) Treatment for a #RareDisease and LIFE, Two Years On  http://www. dailymail.co.uk/health/article -5745377/Twins-babies-treated-genetic-disease-WOMB-thriving.html   …   #ITRTG #innovation #inspiration #SNRTG #BigData #science #genetics #genomics #biotech #technology #SciComm<br>http://pic.twitter.com/Ho8TDQUtrv
A second grade student from Windham battling a rare skin disease got to spend some time in the spotlight Friday evening. The Windham High School girls’ softball team made some room on their roster for Melina Spinazola and her sister to be honorary bat ...
SclerodermaRF 20/05/2018 06:32
June is #scleroderma awareness month. #RareDisease #autoimmune #Raynauds #lifechanging no cure #SclerodermaFreeWorld #RaynaudsFreeWorld #research #hope #arthritis #systemic #skin #fibrosis #collagen #DigitalUlcers @RoyalFreeChty @RheumatologyUK @NIHR_PRAI @NIHRCRN_nthames
http://pic.twitter.com/p4wWqKWaEu
June is #scleroderma awareness month. #RareDisease #autoimmune #Raynauds #lifechanging no cure #SclerodermaFreeWorld #RaynaudsFreeWorld #research #hope #arthritis #systemic #skin #fibrosis #collagen #DigitalUlcers @RoyalFreeChty @RheumatologyUK @NIHR_PRAI @NIHRCRN_nthames<br>http://pic.twitter.com/p4wWqKWaEu
Two school communities are coming together in a fight for life for two little boys who are victims of a rare and ominous disease. "Everybody sees these happy fun loving kids that are just playful and full of energy but the reality is that's all going to go ...
SclerodermaRF 20/05/2018 06:03
#bbcchelsea skin deep garden fantastic representation of #skin condition #scleroderma #hardskin #RareDisease #autoimmune #Raynauds no cure #SclerodermaFreeWorld #RaynaudsFreeWorld #research #hope #lifechanging #debilitating #systemic #collagen #systemic @RoyalFreeChty @NIHR_PRAI
http://pic.twitter.com/4Ll0H8YeP6
#bbcchelsea skin deep garden fantastic representation of #skin condition #scleroderma #hardskin #RareDisease #autoimmune #Raynauds no cure #SclerodermaFreeWorld #RaynaudsFreeWorld #research #hope #lifechanging #debilitating #systemic #collagen #systemic @RoyalFreeChty @NIHR_PRAI<br>http://pic.twitter.com/4Ll0H8YeP6
(WCMH) An Ohio teacher is giving the gift of life to a student at her school. Tonya Thomas is a fourth grade teacher at Slate Ridge Elementary School in Reynoldsburg. She's donating her kidney to 10-year-old Eva who is need of a transplant after being ...
Rare Revolution Mag 20/05/2018 05:28
#SBS @TheoPaphitis 350 MILLION worldwide are affected by a #raredisease! YES 350 million! Need we say more about importance of 1st ever dedicated FREE rare disease publication providing inspiration, empowerment, education & awareness. Oh & we have a kids team & publication too!
http://pic.twitter.com/C0wkAUsFa3
#SBS @TheoPaphitis 350 MILLION worldwide are affected by a #raredisease!  YES 350 million! Need we say more about importance of 1st ever dedicated FREE rare disease publication providing inspiration, empowerment, education & awareness. Oh & we have a kids team & publication too! <br>http://pic.twitter.com/C0wkAUsFa3
Takeda’s $62 billion acquisition of Shire plc on Tuesday would accelerate the Japanese drugmaker’s transformation into a global pharmaceutical giant by significantly expanding its pipeline of rare disease treatments, a top executive based in Cambridge ...
Mariya Moosajee 20/05/2018 04:33
Preparing my talks for annual #RCOphth2018 meeting starting tomorrow @ACCLiverpool. One on #epidemiology of #raredisease causing childhood #blindness in the #UK. The other is on #Genomics and #GeneTherapy. Please come along! @RCOphth @Moorfields @MoorfieldsBRC @GreatOrmondSt
http://pic.twitter.com/InGp2EnSfF
Preparing my talks for annual #RCOphth2018 meeting starting tomorrow @ACCLiverpool. One on #epidemiology of #raredisease causing childhood #blindness in the #UK. The other is on #Genomics and #GeneTherapy. Please come along! @RCOphth @Moorfields @MoorfieldsBRC @GreatOrmondSt<br>http://pic.twitter.com/InGp2EnSfF
Global Genes 20/05/2018 02:30
Good luck to all of the #raredisease advocates participating in the Million Dollar Bike Ride hosted by @MDBRide4Rare today! We're cheering for you & applaud your efforts to raise funding for rare disease research. #PennMedMDBR2018
Genomics Education 20/05/2018 01:00
Never underestimate the power of a diagnosis. Watch this short film from @GenomicsEngland and hear from Alex and his mum Kirsty: socsi.in/0kzXk   #raredisease #genomics
http://pic.twitter.com/QBRMTTs7Bc
Never underestimate the power of a diagnosis. Watch this short film from @GenomicsEngland  and hear from Alex and his mum Kirsty:   http:// socsi.in/0kzXk      #raredisease #genomics<br>http://pic.twitter.com/QBRMTTs7Bc
Kristin Smedley 20/05/2018 12:06
Oh my I love living and working in and around this town! Million Dollar Bike Ride for #raredisease is underway... Philly style! #ROCKY #bike4sight @CureCRB1 @MDBRide4Rare #Philly #cycling
http://pic.twitter.com/rVpgiUWHGf
Ashley Winslow 20/05/2018 11:49
Gearing up to start the 5th annual million Dollar Bike Ride #MDBR @MDBRide4Rare 30 #raredisease Disease teams, 28 states!
http://pic.twitter.com/4TuYrPEbnB
Gearing up to start the 5th annual million Dollar Bike Ride #MDBR @MDBRide4Rare 30 #raredisease Disease teams, 28 states! <br>http://pic.twitter.com/4TuYrPEbnB
rareLife solutions 19/05/2018 01:37
"When you bring together the community, leverage community passion, you can really have a large impact." David Fajgenbaum @GlobalGenes #ggpennraresymposium #RareDisease
http://pic.twitter.com/EQFaBkB9sh
"When you bring together the community, leverage community passion, you can really have a large impact." David Fajgenbaum @GlobalGenes #ggpennraresymposium #RareDisease <br>http://pic.twitter.com/EQFaBkB9sh
Gillian Smith 19/05/2018 12:21
Scleroderma Family Day at Royal Free Hospital with @PHA_UK. Dr Dan Knight reminded us that 8-12% of scleroderma patients are affected by pulmonary hypertension. #SclerodermaFreeWorld #RareDisease @RoyalFreeNHS @SclerodermaRF @NIHRCRN_nthames
http://pic.twitter.com/Q0AvZZghd9
Scleroderma Family Day at Royal Free Hospital with @PHA_UK.  Dr Dan Knight reminded us that 8-12% of scleroderma patients are affected by pulmonary hypertension. #SclerodermaFreeWorld #RareDisease @RoyalFreeNHS @SclerodermaRF @NIHRCRN_nthames<br>http://pic.twitter.com/Q0AvZZghd9
EFNA 18/05/2018 12:28
There's just 3 days left to complete our Survey of Young Europeans with Neurological Conditions https://www. surveymonkey.com/r/EFNA-YS   If you know someone aged 18-35 living with #MS, #migraine, #epilepsy, #chronicpain or #RareDisease please RT & let them know! Survey available in 8 languages.
http://pic.twitter.com/KLHlhO7eua
There's just 3 days left to complete our Survey of Young Europeans with Neurological Conditions  https://www. surveymonkey.com/r/EFNA-YS      If you know someone aged 18-35 living with #MS, #migraine, #epilepsy, #chronicpain or #RareDisease please RT & let them know! Survey available in 8 languages. <br>http://pic.twitter.com/KLHlhO7eua
FahrBeyond 18/05/2018 11:21
Fantastic meeting of our directors setting out our future plans &what we can do to progress Looking forward to the journey #Fahrs #RareDisease @Adam_Tate1 @CarinaFearnley @StinsonTheatre We're on a mission to raise awareness &support those with Fahrs @BBCHughPym @ParkinsonsUK
NORD 18/05/2018 12:57
“There is no stronger force in the universe than the parent of a child with a #raredisease.” -Derek Gavin, Director of Development at #NORD #RareImpact
http://pic.twitter.com/0kUcFQCsET
“There is no stronger force in the universe than the parent of a child with a #raredisease.” -Derek Gavin, Director of Development at #NORD #RareImpact<br>http://pic.twitter.com/0kUcFQCsET
Yoni Maisel. 17/05/2018 09:48
PICTURE THIS - Disability Inclusion https://www. fastcompany.com/40573686/getty -is-trying-to-bring-disability-inclusion-to-stock-photos   … #IT #IoT #SNRTG #SocialJustice #BigData #disability #disabilities #SciComm #MedEd #genetics #RareDisease #RareDiseases #ITRTG #photography
http://pic.twitter.com/J9Gd4o5Xdn
topsy
Kate Learoyd 17/05/2018 07:01
I’m so pleased that @LizTwistMP has obtained a 90 minute Westminster Hall debate on 26 June on the forgotten #RareDisease #pku - MPs listened to our members heartfelt stories. If you want change ask your MP to speak.
http://pic.twitter.com/64JkjPlYo3
I’m so pleased that @LizTwistMP has obtained a 90 minute Westminster Hall debate on 26 June on the forgotten #RareDisease #pku - MPs listened to our members heartfelt stories. If you want change ask your MP to speak.<br>http://pic.twitter.com/64JkjPlYo3
Backpack Health 17/05/2018 03:18
We're excited to announce our new customized healthcare management solution for the #Marfan & related disorders community, the result of our partnership with @MarfanFdn! It's secure, easy to use, and FREE when you join the group. Learn more - https:// bit.ly/2InCMTn   #RareDisease
http://pic.twitter.com/XuvJjQxfVF
We're excited to announce our new customized healthcare management solution for the #Marfan & related disorders community, the result of our partnership with @MarfanFdn! It's secure, easy to use, and FREE when you join the group.  Learn more -  https:// bit.ly/2InCMTn      #RareDisease <br>http://pic.twitter.com/XuvJjQxfVF
Ross 17/05/2018 02:56
I am convinced that #genomicsequencing needs to be done with #raredisease to open doors and find answers! #WTFix
Joanne Ferguson 16/05/2018 04:51
The Big Little Warriors of Brazil - Simone Rosito, founder of @institutopgg, explains in the latest https:// signec.org/blog/   how they are working to improve our understanding of #NEC and to help families affected by this #raredisease. #preventNEC #NECday #pretermbirth
http://pic.twitter.com/X6iG7cIk6Z
The Big Little Warriors of Brazil - Simone Rosito, founder of @institutopgg, explains in the latest  https:// signec.org/blog/      how they are working to improve our understanding of #NEC and to help families affected by this #raredisease. #preventNEC #NECday #pretermbirth<br>http://pic.twitter.com/X6iG7cIk6Z
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