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Some interesting
#raredisease facts... if you’re rare you’re not alone!#RareDC2018#zebrastrongpic.twitter.com/SuXUAFNNKZ
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save your donkeys and elephants :) no one is excluded from rare disease and everyone benefits with the needs are addressed.
@RareAdvocates#RareDC2018 pic.twitter.com/6OUbjlodIe
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Proud to advocating with my daughter on Capitol Hill. Amongst an impressive group of
@Amyloidosis_ARC patient advocates.#RareDC2018 pic.twitter.com/WcxjGbZmkp
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First stop for raising awareness for
#Amyloidosis#RareDC2018 pic.twitter.com/eKfIYD0eOa
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After a long, productive week. This two year old advocate was just ready for a nap. Thank you for an incredible Rare Caucus Briefing
#Raredc2018 pic.twitter.com/s3bhfQA55z
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“[People with rare diseases] need the OPEN Act passed, and you need it passed yesterday” — Michael Manganiello at
#RareDC2018 -
@SenGillibrand is a champion of the Living Donor Protection Act. Had the chance to thank her staff on behalf of@AlportSyndFndn patients and discuss advancing therapies for rare disease#RareDC2018 pic.twitter.com/a2vqQbIVcO
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Today is Rare Disease Day and we have been having a great Rare Disease Week on Capitol Hill, helping give patients a voice. Thanks to all our sponsors, like
@GSK for their support#RareDC2018 -
#RareDC2018 Alpha-1 Advocate Ken Richmond at the office of Sen Mark Warner where Access to Precision Medicine Act (H.R.5062) was discussed.#Alpha1awarenesspic.twitter.com/2otHPzo2YT
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Got to meet with my congressman,
@RepEliotEngel staff to advocate for@AlportSyndFndn patients and thank him for being part of rare disease congressional caucus#RareDC2018 pic.twitter.com/bZtBfgpeVh
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TODAY is WORLD RARE DISEASE DAY! Rare conditions like Klippel-Feil need research, treatments, understanding 4 LIFE.
#RareDC2018#WRDD2018@GlobalGenes@RareDiseases@eurordis@rarediseaseday@US_Pain@SanfordCoRDS@RarePOV@Raresupport@rareundiagnosed@GeneticAlliance@lseiders3pic.twitter.com/rx5B5qEpJz
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Thank you to Senate Minority Leader
@SenSchumer staff for meeting with us to discuss needs of rare and@AlportSyndFndn patients#RareDC2018 pic.twitter.com/wa8iN5QiIi
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Thank you
@FrankPallone for supporting rare disease legislation!#raredc2018 pic.twitter.com/sZ3hsI2p7y – mjesto: United States Capitol Building
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UofL child neurologist Chris Barton and
#RareDC2018 advocate from CA. We're here for the same reasons, advocating for children with SMA and other neurologic conditions.#NOH18#AANadvocacy @UofLPhysicians pic.twitter.com/Ke8KXDaSc3
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It never gets old. Finishing up a good
#raredc2018. Thanks, everyone. pic.twitter.com/yHDEXhRb0t
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Sickle Cell Warriors showing support and letting there voices be heard at Rare Disease Week on Capitol Hill
#RAREDC2018@SickCells -
Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
#RareDC2018 https://buff.ly/2GOSWA5 -
The ADA Education & Reform Act H.R. 620 introduced by Rep. Ted Poe (R-TX) would seriously weaken Americans with Disabilities Act
#raredc2018 -
Ohio rare disease advocates having their voices heard on Capitol Hill. Thanks to the offices of
@senrobportman and@SherrodBrown for their time and hope you’ll support legislation to help rare disease patients#RareDC2018 pic.twitter.com/VHpYNW9oiL
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#RareDC2018 Day one underway. All participants welcome to attend the PPA reception tonight at the Washington Court Hotel!!!
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