The EB Advocate retweeted
Did you know there are more than 7,000 identified #rarediseases? There are 25-30 million Americans impacted by a rare diseases. #ShowYourStripes #RareDiseaseDay #ShareYourRare
The EB Advocate retweeted
Today marks the 12th annual #RareDiseaseDay! We are grateful to all those who stand with the #EpidermolysisBullosa community as we push forward to improved care, treatments, and a cure. Together, #WeFightEB today and every day. Learn more: debra.org/rare-disease-day #ShowYourRare
Are you wearing your stripes today? We are! Thank you @RareDiseases @debraOfAmerica #ShowYourStripes #ShowYourRare #EBAwareness #fightEB #EpidermolysisBullosa #RareDisease #RareDiseaseDay
Are you wearing your stripes today? We stand in support of kids and adults living with EB #ShowYourStripes #ShowYourRare #EBAwareness #fightEB
February 28, 2019 marks the 12th annual @rarediseaseday, an international campaign to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. Learn how you can get involved: debra.org/rare-disease-day
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We can't wait to participate in #ShowYourRare on 2/28 at McKesson Patient Care Solutions! #FightEB #EBAwareness Will you join us?
There are many ways to #ShowYourRare for #RareDiseaseDay 2019. Find out how you can join in today >> rarediseaseday.org/article/s…
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#RareDiseaseDay takes place on the last day of February to raise awareness about rare diseases and their impact on patients' lives. Kudos to our partners at @MassBio and orgs @RareDiseases @rarediseaseday for organizing nat'l and int'l campaigns. #ShowYourStripes #ShowYourRare
Attention #LosAngeles area families! @ChildrensLA is hosting an EB Family Day on Sunday, February 10. Learn about community resources, get to know the CHLA EB Team, connect with others living with #EpidermolysisBullosa, and more! Please see flyer below for details:
Do you have a tip to share with EB families? We learn from each other! ebnurse.org/family-to-family…
#EBAwareness #epidermolysisbullosa
Is there a @WalkForEB date for 2019? We would love to put it on the EBNurse.org calendar!
Happy New Year to our Walk for EB family! Stay tuned for more updates coming soon including the date for this years walk!
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$5,000 donation on the line for @debraOfAmerica ... have you voted? It's easy to do! #EBAwareness
debra of America is 1 of 4 organizations chosen for @Nuventra's Annual Holiday Donation Vote! The org that gets the most votes will receive $5,000 in donations from Nuventra. Voting closes at midnight on 12/31 and the winner will be announced on 1/1: nuventra.com/2018-holiday-vo…
We redesigned ebnurse.org to make it easier to find EB resources like the EB Newborn Care guide - available in English and Spanish. Check it out and learn about EB. ebnurse.org/newborn-care/ #EBAwareness
The EB Advocate retweeted
Congrats to #TEAMDEBRA for completing the 2018 #TCSNYCMarathon in support of the EB Community! Not only did they trek across 26.2 miles of NYC terrain, but they fundraised an incredible $50,000 to go towards our mission. Way to go, team!
The EB Advocate retweeted
When you have questions about EB, it helps to have an expert to turn to. Since 2002, our EB Nurse Educator Program has been a trusted source of accurate, timely information for those with EB, their family members, and the medical community. Get in touch at debra.org/nurse
Check out our fresh new look at EBNurse.org ... we are proud of our dedicated team whose serves EB community by providing wound care, billing insurance + sharing EB information. #EBAwareness #WeFightEB #MeettheEBAdvocates
YES!! #EBAwareness ... Awareness is the first step in finding a cure!
This Post is from an account that no longer exists. Learn more
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Workplace fundraisers are 1 way #WeFightEB at McKesson Patient Care Solutions. Dedicated team to help EB families get supplies they need and bill their insurance. Learn more at ebnurse.org #EBAwareness
The EB Advocate retweeted
Today starts EB Awareness Week. We celebrate those with EB who not only overcome the challenges EB presents, but also thrive. Treatments are on a path to reality, my daughter, Rafi's life will be better. Hopeful is the word today & this week.
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