#EBaware - Twitter Hashtag

Debra - The Butterfly Skin Charity @debraireland

over 5 years ago

25-31 Oct is #EBAwarenessWeek. Currently there's no cure for EB. Awareness means more empathy, more compassion, more kindness, and more funding which leads to research. We're excited to be working with some Irish influencers this year to make them #EBAware. Watch this space🧐

debraireland's tweet photo. 25-31 Oct is #EBAwarenessWeek. Currently there's no cure for EB.

Awareness means more empathy, more compassion, more kindness, and more funding which leads to research. We're excited to be working with some Irish influencers this year to make them #EBAware. Watch this space🧐 https://t.co/2WmHppafRD

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Debra - The Butterfly Skin Charity @debraireland

over 5 years ago

The amazing Gunita and daughter Maria took part in the @VhiWMM for DEBRA Ireland on Saturday. Gunita pushed Maria the whole 10km in her buggy. It never ceases to amaze us the courage & determination of our families. We are SO PROUD of you Gunita & Maria #EBAware #EBWarriors🦋💙

debraireland's tweet photo. The amazing Gunita and daughter Maria took part in the @VhiWMM for DEBRA Ireland on Saturday. Gunita pushed Maria the whole 10km in her buggy. It never ceases to amaze us the courage & determination of our families. We are SO PROUD of you Gunita & Maria #EBAware #EBWarriors🦋💙 https://t.co/Wc1bcudl9N

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Debra - The Butterfly Skin Charity @debraireland

over 6 years ago

Thank you for sharing @DisabilityFed 🙂 Please tune in to @RTEOne from 10.05pm to watch Alana (4), an incredibly brave superhero, and her family as they show us what life is like living with the debilitating condition #epidermolysisbullosa 🦋 #EBAware

DFI @DisabilityFed

over 6 years ago

This programme is just what we need, positive solutions to complex problems and tonight our members @debraireland in the spotlight. @RTE

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Debra - The Butterfly Skin Charity @debraireland

over 6 years ago

"People with EB like my daughter Casey deserve better - they deserve more specialist, permanent EB nurses that DEBRA Ireland are fighting for. Children's Hospital Ireland and Irish politicians can make that happen." Join our campaign https://t.co/LH2WHcMqXE #GE2020 #EBAware

debraireland's tweet photo. "People with EB like my daughter Casey deserve better - they deserve more specialist, permanent EB nurses that DEBRA Ireland are fighting for. Children's Hospital Ireland and Irish politicians can make that happen."

Join our campaign
https://t.co/LH2WHcMqXE #GE2020 #EBAware https://t.co/GfU3EiX7KU

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Debra - The Butterfly Skin Charity @debraireland

over 6 years ago

DEBRA Ireland board member, @realBobbyHealy, will be on @WeekendOnOneRTE with Brendan O'Connor from 11am tomorrow asking our future politicians to make the rights of EB patients a priority & why he's challenged himself to spend 6 days in the 🥶Arctic🥶 this March #EBAware #GE2020

debraireland's tweet photo. DEBRA Ireland board member, @realBobbyHealy, will be on @WeekendOnOneRTE with Brendan O'Connor from 11am tomorrow asking our future politicians to make the rights of EB patients a priority & why he's challenged himself to spend 6 days in the 🥶Arctic🥶 this March #EBAware #GE2020 https://t.co/LpDNQy85il

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Debra - The Butterfly Skin Charity @debraireland

over 6 years ago

We are working hard to make our future politicians #ebaware. Will you help? When your candidates come looking for your vote ask them two simple questions: What will you do to help people with disabilities and have you ever heard of EB? https://t.co/1KcS6qTJP5 #cblive #ge2020

debraireland's tweet photo. We are working hard to make our future politicians #ebaware.
Will you help?
When your candidates come looking for your vote ask them two simple questions: What will you do to help people with disabilities and have you ever heard of EB? https://t.co/1KcS6qTJP5
#cblive #ge2020 https://t.co/RSa9oWHLEI

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Suzzy @suzzyleelee

over 7 years ago

Some people are not famous to the world but they are famous to those around them. In addition to sending love and prayer, Google EB, help with awareness and research. So many deserve a chance. #WestonEBWarrior #EBaware Weston Zucha 1994-2018

suzzyleelee's tweet photo. Some people are not famous to the world but they are famous to those around them. In addition to sending love and prayer, Google EB, help with awareness and research. So many deserve a chance. #WestonEBWarrior #EBaware

Weston Zucha 1994-2018 https://t.co/VFxB4CldhZ

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Stoneacre Studios🇮🇪🎨 @artymaggie

over 7 years ago

#EBWeek #SeeMeNotEB #seemenotEB #seemenoteb #EpidermolysisBullosa #EBaware #EBawareness 🦋 🦋 🦋 🦋 🦋 🦋 🦋 🦋 Support @debraireland & pick up your butterfly tattoo at any @goapplegreen & text BUTTERFLY to 50300 to donate €4 to @debraireland

Dermot Whelan @TheDermotWhelan

over 7 years ago

Would love a donation folks, if you can spare 4 euros! Superheroes like Claudia live a life of constant pain. The constant starting hurts just as much. Help us stop the staring for… https://t.co/l8qcfZrBBi

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Marcus Ó Buachalla @ohfadabee

over 7 years ago

...just like that! #EBAware #EBAwarenessWeek @debraireland 🦋

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Fiona Coghlan @CoghlanFiona

over 7 years ago

Get out and grab a tattoo for @debraireland EB awareness week. Having met @emma_p_fogarty & Claudia over the last couple of years their positivity is amazing considering their daily pain. Help support this campaign to research for a cure. #seemenotev #cureeb #ebaware

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Debra - The Butterfly Skin Charity @debraireland

over 7 years ago

Just like @Deanrock14 of @DubGAAOfficial, you can support #EBWEEK by picking up your butterfly tattoo in @goapplegreen nationwide and texting BUTTERFLY to 50300 to Donate €4 #SeeMeNotEB #Cureeb #deanrock #ebaware #DublinGAA

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Debra - The Butterfly Skin Charity @debraireland

over 7 years ago

Thank you for your support! #ebaware

Health Research Charities Ireland - HRCI @HRCIreland

over 7 years ago

Delighted to support our members @debraireland this morning at the launch of their new report on the optimum role and function of an #EB Outreach Nurse

HRCIreland's tweet photo. Delighted to support our members @debraireland this morning at the launch of their new report on the optimum role and function of an #EB Outreach Nurse https://t.co/5YwplHjZlv

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Finian McGrath @Finian_McGrath

over 7 years ago

Very pleased to have launched the report "Identifying the Optimum Role and Function of an Epidermolysis Bullosa (EB) Outreach Nurse" in Buswells Hotel this morning. Thank you @debraireland for your kind invitation to be part of this event. #ebaware

Finian_McGrath's tweet photo. Very pleased to have launched the report "Identifying the Optimum Role and Function of an Epidermolysis Bullosa (EB) Outreach Nurse" in Buswells Hotel this morning. Thank you @debraireland for your kind invitation to be part of this event. #ebaware https://t.co/tQs97xp87b

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Debra - The Butterfly Skin Charity @debraireland

over 7 years ago

EB Mum Liz Collins on the importance of the role of a permanent EB Outreach Nurse #ebaware

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Debra - The Butterfly Skin Charity @debraireland

over 7 years ago

Dr Sinead Hickey, Head of Research @debraireland presents the findings of the UCD study into the EB Outreach Nurse Role #ebaware

debraireland's tweet photo. Dr Sinead Hickey, Head of Research @debraireland presents the findings of the UCD study into the EB Outreach Nurse Role #ebaware https://t.co/VZfBVMg773

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Debra - The Butterfly Skin Charity @debraireland

over 7 years ago

Dr Rosemarie Watson, Consultant Dermatologist @olchc presenting on EB service provision & the challenges they face trying to battle this relentless condition #ebaware

debraireland's tweet photo. Dr Rosemarie Watson, Consultant Dermatologist @olchc presenting on EB service provision & the challenges they face trying to battle this relentless condition #ebaware https://t.co/oLbL3RDud2

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Debra - The Butterfly Skin Charity @debraireland

over 7 years ago

Minister for Disabilities @FinianMcGrathTD launching the @debraireland Report for the EB Outreach Nurse's Role study #ebaware

debraireland's tweet photo. Minister for Disabilities @FinianMcGrathTD launching the @debraireland Report for the EB Outreach Nurse's Role study #ebaware https://t.co/0G2aJJACba

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Debra - The Butterfly Skin Charity @debraireland

almost 8 years ago

Our very own 🦋EB hero🦋 Maria heading off for her first day of preschool! This is a monumentous day for Maria and her family. Good luck Maria & all those heading back to school this week! #EBheroes #BackToSchool #EBAware

debraireland's tweet photo. Our very own 🦋EB hero🦋 Maria heading off for her first day of preschool! This is a monumentous day for Maria and her family. Good luck Maria & all those heading back to school this week! #EBheroes #BackToSchool #EBAware https://t.co/V5727p6Ujm

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Debra - The Butterfly Skin Charity @debraireland

almost 8 years ago · Dublin City

EB is the worst condition you've probably never heard of. #cureEB #Ebaware

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Debra - The Butterfly Skin Charity @debraireland

almost 8 years ago

By supporting our EB Community Care Programme you enable us to provide in home services to families living with EB. Families have a ‘spare battery’ to help them negotiate administrative, practical, clinical & emotional obstacles that EB presents. Thank you. #cureEB #EBAware

debraireland's tweet photo. By supporting our EB Community Care Programme you enable us to provide in home services to families living with EB. Families have a ‘spare battery’ to help them negotiate administrative, practical, clinical & emotional obstacles that EB presents. Thank you. #cureEB #EBAware https://t.co/n5gk1nxzYG

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