-
#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#CancerSurvivor -
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 …
-
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 -
The amazing
@jhamptonia prints from Eddie Vedder’s#SurfInCelebration are being packed as we speak and will be shipped next week! Thank you all so much for your support, donations, and patience.

#CauseTheWave to#HealEB#PearlJam#EBRP#EpidermolysisBullosapic.twitter.com/7lJiWwkMby
-
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!#healEB https://twitter.com/Humankindvideos/status/1218276809550245888 …
4:29 -
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/9xGIhfe4Oi0 -
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


-
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/3aaZj08 -
Thank you to everyone who made this possible and continues to stand with us to accelerate life-saving treatments and cures to
#HealEB. https://twitter.com/EBResearch/status/1212849703529914371 … -
Here is your chance to own an incredible piece of
@PearlJam memorabilia from this special night and help#CauseTheWave to#HealEB! All proceeds benefit@EBResearch. Find details at link below. https://www.ebay.com/itm/Pearl-Jam-2014-St-Paul-MN-Drumhead-Autographed-Signed-by-Entire-Band-/202861324197 …pic.twitter.com/WjyU4N5N1o -
28. Covers, duets, guest spots, solo shows. 27. Love Boat Captain. 26. Red, red wine. 25. Iconic Rolling Stone Magazine ass-wipe. 24. Said this about Jeff: "He's not just a secret weapon--he's an atomic bomb." 23. 23 22. Wants to
#CauseTheWave and#HealEB 21. Fanboys The Who. -
.
@CIBCInnovation Banking is an annual@EBResearch Silver Sponsor. EBRP is a research fund aimed at treating & ultimately curing Epidermolysis Bullosa (EB). On#GivingTuesday, Support the causes that matter to you most! http://bit.ly/33NbNGG#healEB@sickkids#EBCommunity -
Epidermolysis bullosa is ‘Hard to say. Hell to live with.’ We’re raising awareness and funds for research to
#CureEB. Please visit our website and get involved during#EBawarenessweek http://www.cure-eb.org#HealEB#FightEB
@PrideOfBritainpic.twitter.com/TKa18GhTQX -
We envision a world where individuals with EB won't have to wrap their wounds in bandages any longer. This
#EBAwarenessWeek, make it a point to tell someone about EB and how they can get involved in our mission to find treatments and cures. Together, we will#healEB
pic.twitter.com/pNUw5Sm6zH
-
Patients like Eli and their families living with
#EB are inspiring. Join us during National#EpidermolysisBullosa Awareness Week on October 25-31 to raise awareness and support the EB community#ComeSayHi#HealEB,#EBMRF#WeFightEBpic.twitter.com/cwaKXWxbYd -
Rock4EB! was an unforgettable evening with
#EddieVedder,@AdamSandler, and@JuddApatow that raised over $900,000 for life-saving#EBResearch. Thank you to all who supported this fantastic event that benefited ours and@ebmrf's efforts to#healEB


-
Last night
@AdamSandler invited his two young daughters on stage to perform a Taylor Swift song at a benefit concert for Epidermolysis Bullosa.#EB is what my son Ermias was born with some 7 years ago.@EBResearch#ebmrf#ebrun4ermias#rock4eb#healeb https://youtu.be/mjp1U0nL5Wo -
"moonfrye - One of the greatest nights with these incredibly inspiring friends.
@jillvedder77 I love you and all the incredible work you are doing to#healeb. Eddie &@Glen_Hansard SO brilliant!#healeb#ebrp#ebresearch#rock4eb " https://www.instagram.com/p/B3UopaNlWjb pic.twitter.com/xM5GwqNh8r -
This little guy was excited to see that the butterflies have migrated all the way here to a Toledo, Ohio...and they even flew here in the “A” formation
#CTWButterfly#CauseTheWave#HealEB#ABforEB@WishlistCTWpic.twitter.com/lmlp84lXcz
-
Looking forward to attending another year of Action for Jackson and supporting
@EBResearch#healeb https://twitter.com/EBResearch/status/1174322183612567552 …
Čini se da učitavanje traje već neko vrijeme.
Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.

