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#EBSuperhero@DeannaMolinaro is truly an inspiration. Despite EB's constant nagging, she's currently cancer-free
, has her own freelance business as an independent artist
, and acts as a global EB advocate
. Way to go, Deanna! #healEB#CancerSurvivorHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
EBRP CEO
@MichaelPHund is speaking at@GlobalGenes#DataDIY in Houston today on our work with@awscloud to leverage data to#healEB. Click here to register and view the livestream: https://bit.ly/2vNiwFn https://twitter.com/GlobalGenes/status/1224724963015286784 …
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
In just 3 years,
#PlungeForElodie has evolved from a hometown fundraiser to an international event.@WickedLocal covers the inspiration behind the Plunge, the wonderful women who organize it, and how YOU can get involved!#HealEB
https://bit.ly/38VJKYO Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
EBRP CEO
@MichaelPHund will be speaking at 12pm ET on@fastercures' "Patient Organizations As Research and Data Partners" Webinar along with@MichaelJFoxOrg &@SethSaidSo. Register at http://cvent.com/d/3hqh3t/4W !
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We partnered with
@SMASFoundation@HorizonNews &@Humankindvideos to bring#EBSuperhero John Hudson's song to life with@michaelfranti and are excited to share the awesome results!#healEBhttps://twitter.com/Humankindvideos/status/1218276809550245888 …
4:29Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Tickets are on sale for the 4th Annual
#BelieveInBrady on March 29 in Houston! Join us & our friend#BradyTheBrave for a day of family fun at@levyparkhouston with live music, food, drinks, a silent auction, & kids entertainment. Purchase your tickets or make a donation today!Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
As a partner at
@ebworldcongress, EBRP CEO@MichaelPHund is speaking today our initiative to leverage data to#healEB. Learn more from Michael & EBRP Co-Founder & Vice Chair Jill Vedder's keynote at@awscloud's#IMAGINE Conference last summer:https://youtu.be/9xGIhfe4Oi0Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Get ready to
#PlungeForElodie! We have 4 locations in the USA, so find the event closest to you and join us on 3/7 and 3/8:
Wellesley, MA
Staten Island, NY
San Francisco, CA
Old Greenwich, CT
Click to learn more & donate to #healEB

Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"Where there is life, there is hope" says Silvia, Nicky's mom, on her hope for a future without EB. Nicky is 23 years old and lives with RDEB. Read his full
#EBSuperhero profile to learn more


Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
EB Research Partnership proslijedio/la je Tweet
Join
@fastercures for our first webinar of 2020, on Patient Organizations As Research and Data Partners! Thrilled to feature work of Todd Sherer@MichaelJFoxOrg,@SethSaidSo &@MichaelPHund@EBResearch. Register now: http://www.cvent.com/d/3hqh3t/4W pic.twitter.com/X1PF7s9C4q
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Great News
@AbeonaBio has initiated its Phase 3 clinical trial for EB-101, their gene therapy candidate for treatment of RDEB! This joins@AmrytPharmaPlc's Oleogel-S10 study as the only#Phase3#clinicaltrials in EB. Progress on the path to#healEB!https://bit.ly/3aaZj08Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Here's your chance! Sign up to join
#TeamEBRP for the#NYCHalfMarathon on March 15. Get started on those#2020Resolutions by getting in shape AND raising money for#EBResearch. Send us a message to sign up today!

pic.twitter.com/gS2oW72rxA
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Calling all individuals with EB and parents! We want to share your stories to give supporters a glimpse of life with EB. Fill out the form at the link below to sign up for our
#EBSuperheroes program. A member of our team will be in touch. Can't wait to hear from you!
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Leo is the
#BestBigBrother! Whether they’re playing Rock ‘Em Sock ‘Em Robots or racing cars, Leo is always watching out for his little brother Brady. His biggest wish: to see Brady cured of EB. Visit http://www.ebresearch.org/donate to help make EB a thing of the past
pic.twitter.com/Ka2L4FnrwrHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We hope 2020 treats you as well as the
dessert bar
treated Eli at our fall gala this year! Our events calendar is set for Q1 with @PlungeForElodie (3/7 & 3/8), the 2020 NYC Half Marathon (3/15), and Believe in Brady (3/29). Save the dates and get involved!
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Every EB patient is different and ALL deserve treatments and cures. We strive to fund diverse research techniques for all types of EB. Some are even specific to the exact location of a patient's personal genetic
#mutation. We're excited to fund more innovation in 2020!

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.
@AADskin honored Dr. Karen Wiss as a Patient Care Hero for her work with Jonathan Gionfriddo, a patient who lives with RDEB. EBRP proudly funds Dr. Wiss's EB Clinic@UMass as part of our EB Clinical Research Consortium (EBCRC). Congrats Dr. Wiss!
https://bit.ly/2rY8nUL Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
In 2019, we funded research at 28 centers in 6 countries. The deadline for our first grants cycle of 2020 is January 15 at 11:59pm EST. Click the link to learn how to submit your research proposal to
#healEB!

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We broke our records in 2019, spending $5.5 million on 21 research projects - both the largest amount of money and number of projects we've ever funded. We're excited to continue working hard and breaking records in 2020. Join us in our mission to
#healEB!
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Happy Birthday EBRP Co-Founder
#EddieVedder of@PearlJam! His love for the EB community & dedication to find treatments & cures has amplified our mission worldwide, raising awareness & funds to#healEB. Thank you for your relentless support.


#CauseTheWave#ComeSayHipic.twitter.com/tBpyJA1gkX
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