EB Resource

Providing EB patients, families and healthcare providers a place to share experiences while accessing the latest EB research, information and ideas.

[EB Resource @EBResource]

Stay connected through these other strong EB-focused networks: debra, EBMRF, EBRP and more. This isn't goodbye but instead - see you over there!

[EB Resource @EBResource]

Sharing once again one of my favorite blogs that says precisely why I love the EB community. https://t.co/T0xb1MhGyM #EBawareness

[EB Resource @EBResource]

In case you missed it, we blogged recently about a change to EB Resource. We have some heartfelt words to share with you. https://t.co/wNv5ZHTeSG

[EB Resource @EBResource]

"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: https://t.co/O9AimnwbTc #EBawareness

[EB Resource @EBResource]

Kudos to Retrophin and Horizon Pharma for making big contributions to research for rare disease treatments and possible cures. https://t.co/XilfhRzZCg #EBawareness

[EB Resource @EBResource]

Show your support for EB awareness events and fundraisers this Spring. Check out this recent blog: https://t.co/uHGCYWOOkY #EBawareness

[EB Resource @EBResource]

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

[EB Resource @EBResource]

This weekend, the EB Research Partnership holds its 2nd annual Believe in Brady fundraiser. Learn how to lend your support! https://t.co/XejrQkvAwS #EBawareness

[EB Resource @EBResource]

PEOPLE Magazine recently introduced readers to a Connecticut family that shared their EB story. Full article via @people: https://t.co/YpNNqJRJ6o #EBawareness

[EB Resource @EBResource]

Wishing our EB Resource community a very happy Easter to all who celebrate!

[EB Resource @EBResource]

A science blogger recently discussed gene therapy for "butterfly children" and what the future may hold for EB treatment. https://t.co/du05ZA455t

[EB Resource @EBResource]

It's been said 'it takes a village,' and so it is for EB families, where leaning on each other can be invaluable. https://t.co/1bnjVlANav

[EB Resource @EBResource]

It takes a lot of courage for a family to share its EB story. This past blog offers tips for taking that big step. https://t.co/fCYjl1e2sf

[EB Resource @EBResource]

We just learned a feature film is in the works about Jonny Kennedy, an early figure who shared his EB story with the public. https://t.co/ixTqSPw0Ja

[EB Resource @EBResource]

If you could interview a genetic scientist about the latest EB research, what questions would you want to ask?

[EB Resource @EBResource]

Yesterday, we blogged about upcoming #EBawareness events and fundraisers. Do you know of any events this Spring? Let us know here.

[EB Resource @EBResource]

Did you hear of the 7,000 Mile Rare Movement? We wonder if Feb.'s Rare Disease campaign could inspire a similar EB event! https://t.co/jvTVbzxk0k #EBawareness

[EB Resource @EBResource]

Next month, EB Research Partnership holds its second annual Believe in Brady fundraiser in Houston. Read more here. https://t.co/QSjbRnbUu1

[EB Resource @EBResource]

Today is Rare Disease Day, an annual global effort to raise awareness for rare diseases like EB. Learn about it. https://t.co/192DcPCISJ

[EB Resource @EBResource]

Some of Australia's biggest bands gathered to honor a little girl with EB to raise funds and awareness for the disease. https://t.co/tqQNUAOxLW