EB Resource @EBResource
Providing EB patients, families and healthcare providers a place to share experiences while accessing the latest EB research, information and ideas. hollisterwoundcare.com Libertyville, IL Joined February 2010-
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Stay connected through these other strong EB-focused networks: debra, EBMRF, EBRP and more. This isn't goodbye but instead - see you over there!
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Sharing once again one of my favorite blogs that says precisely why I love the EB community. bit.ly/1nl5SDh #EBawareness
In case you missed it, we blogged recently about a change to EB Resource. We have some heartfelt words to share with you. bit.ly/2uhLb4v
"Here at the EB Resource blog and its social media counterparts, we will be saying a fond farewell and completing our online journey April 20. Thank you again for all the support of EB Resource these many years." Read more: bit.ly/2HtUjFQ #EBawareness
Kudos to Retrophin and Horizon Pharma for making big contributions to research for rare disease treatments and possible cures. bit.ly/2uaeCoJ #EBawareness
Show your support for EB awareness events and fundraisers this Spring. Check out this recent blog: bit.ly/2pw7YVn #EBawareness
Last week, we blogged about the future of the EB Resource blog. What EB-related blogs do you follow that you would recommend to others? #EBawareness
This weekend, the EB Research Partnership holds its 2nd annual Believe in Brady fundraiser. Learn how to lend your support! bit.ly/2u5lXG4 #EBawareness
PEOPLE Magazine recently introduced readers to a Connecticut family that shared their EB story. Full article via @people: bit.ly/2FXuJYf #EBawareness
Wishing our EB Resource community a very happy Easter to all who celebrate!
A science blogger recently discussed gene therapy for "butterfly children" and what the future may hold for EB treatment. bit.ly/2F4IK66
It's been said 'it takes a village,' and so it is for EB families, where leaning on each other can be invaluable. bit.ly/2rI3P38
It takes a lot of courage for a family to share its EB story. This past blog offers tips for taking that big step. bit.ly/2qCXgLq
We just learned a feature film is in the works about Jonny Kennedy, an early figure who shared his EB story with the public. bit.ly/2F3uxKP
If you could interview a genetic scientist about the latest EB research, what questions would you want to ask?
Yesterday, we blogged about upcoming #EBawareness events and fundraisers. Do you know of any events this Spring? Let us know here.
Did you hear of the 7,000 Mile Rare Movement? We wonder if Feb.'s Rare Disease campaign could inspire a similar EB event! bit.ly/2F5t2f6 #EBawareness
Next month, EB Research Partnership holds its second annual Believe in Brady fundraiser in Houston. Read more here. bit.ly/2ruvANn
Today is Rare Disease Day, an annual global effort to raise awareness for rare diseases like EB. Learn about it. bit.ly/2rvlr2R
Some of Australia's biggest bands gathered to honor a little girl with EB to raise funds and awareness for the disease. bit.ly/2DA81rk
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