Sinead Hickey

DEBRA Ireland Research

[Debra - The Butterfly Skin Charity @debraireland]

“Carers often feel like prisoners because care is fragmented and fragile.” - Liz Collins, mother of Claudia, who lives with EB.

We are at the AV room today to present the EB Butterfly Review to Government.

#EB #butterflyskin #EBbutterflyreview #EBAwarenessWeek

[Debra - The Butterfly Skin Charity @debraireland]

A full room at Leinster House this afternoon as TDs & Senators hear first-hand the urgent need for better EB care in Ireland.
#EB #butterflyskin #butterflyreview #EBAwarenessWeek

[Health Research Charities Ireland - HRCI @HRCIreland]

HRCI is pleased to announce that applications for the HRCI Research Impact Award are now being accepted. If you secured funding through the HRCI/HRB Joint Funding Scheme 2010-22, you're eligible! More info & the application form here https://t.co/2TLQOlcA4n #HealthResearchMatters

[Debra - The Butterfly Skin Charity @debraireland]

🚨 Exciting news! We're launching The EB Butterfly Review survey soon! Your feedback is crucial for improving EB care in Ireland. Plus, you could win €500! 💵 Stay tuned for the survey link!🙌

Learn more: https://t.co/MxUFiEGStv

#EBButterflyReview #YourVoiceMatters #EBCare

[Sinead Hickey @SSineadHickey]

@debraireland is attending the @debraOfAmerica Care Conference in Atlanta GA this week. We're delighted to see many of the EB community in the US come together, connect, and have fun.
#DCC2024 #StrongerTogether #HealthResearchMatters

[Debra - The Butterfly Skin Charity @debraireland]

To mark her 40th birthday, Colin Farrell is taking on Emma's Run to 40 by running the @dublinmarathon in honour of his dear friend 👟.

Together, they hope to raise €400,000 for Debra, supporting those with EB. 🦋 #Runto40

👟 Get involved 👉 https://t.co/GJqGPlOYYz

[Health Research Charities Ireland - HRCI @HRCIreland]

HRCI is delighted to present our Annual Report 2023. It was a year filled with highlights as we continued our efforts to advance health research in Ireland. 𝐅𝐢𝐧𝐝 𝐭𝐡𝐞 𝐟𝐮𝐥𝐥 𝐫𝐞𝐩𝐨𝐫𝐭 𝐡𝐞𝐫𝐞 https://t.co/AQC9PxJasO
RT's appreciated!
#HealthResearchMatters

[Rare Disease Clinical Trial Network, Ireland @rare_trial]

🚀 Attention early & mid-career #raredisease researchers! The 2024 RDCTN Seed Funding Award is now open! Kickstart your interventions and clinical trial prep, and showcase your collaboration with Public & Patient partners! Apply now: https://t.co/0IU8vqeetw

[Debra - The Butterfly Skin Charity @debraireland]

Our Research Team @SSineadHickey @sarahmullins134 are attending #WCRD2024 today to learn more about updates in #EB research and promote our ‘Life with EB’ report 🦋 #healthresearchmatters #raredisease

[DEBRA International @InterDEBRA]

Do you have unanswered questions about #EB? Tell us what they are! Help identify the important, unanswered questions about EB and shape the future of #EBresearch.

🇬🇧 All answers received must be in English. See below for translation options.

‼️🆕👉https://t.co/7kPAlzHg62

[Debra - The Butterfly Skin Charity @debraireland]

🚨Research Opportunity!🚨

Trainee Psychologist @SDowneyPsych is seeking parents & siblings (aged 7-16) of children with Epidermolysis Bullosa (EB) to participate in her research.

Email [email protected] to get involved/find out more.
#EB #EpidermolysisBullosa #Research

[Rare Diseases Ireland @RareDiseasesIE]

Have you moved from children's #RareDisease healthcare services to adult services or do you know someone who has or is about to? Please share your experiences and thoughts on process (both positive and negative)
https://t.co/vn8tCUt1ji
Brought to you by [email protected]

[Debra - The Butterfly Skin Charity @debraireland]

There's an exciting opportunity for people impacted by EB to shape the next rare disease strategy by taking part in the Rare Disease Patient Forum hosted by Rare Disease Ireland @RareDiseasesIE. To find out more information, and register your interest please follow the link: https://t.co/4J1qAop1nG

[Debra - The Butterfly Skin Charity @debraireland]

Today, on the eve of #RareDiseaseDay2024, Debra’s Head of Advocacy, Research and Policy @SSineadHickey along with Deirdre Callis, Head of Family Support Services, and Dr Rosemarie Watson, Debra Board member and former Director of EB Services in Ireland, presented the need for access to health services for people impacted by EB to the Oireachtas Committee on Health. We were also joined by Casey Connors (who lives with EB) and her mum Rachel.

Our thanks to @PaulineTullyTD, @ColmBurkeTD, @conwayforclare, @CathalCroweTD, @SeanCroweTD, @davidcullinane, @BernardDurkanTD, @neasa_neasa, @hoeyannie, @cllr_ginokenny, @JohnLahart and @RoisinShortall for their support up to and during the committee meeting.

[Debra - The Butterfly Skin Charity @debraireland]

Dr Linzi Ryan from @MaynoothUni is looking for #PhD applicants for the 'Design of an Epidermolysis Bullosa Simplex sole (DEBS)' project.

Rare diseases, such as EB, often get overlooked when it comes to the development of new treatments. #Research can help change this.

Details of the project and the John Hume PhD scholarship here:  https://t.co/GEbDIH30vE

[DEBRA UK @CharityDEBRA]

Calling all researchers! 🔬

Our 2024 international research funding call is now OPEN.

Join us in advancing knowledge, driving innovation, and working towards a brighter future for individuals living with EB.

How to apply 👉 https://t.co/qjeJD4A1Fo

#ResearchFunding #Research

[Rare Diseases Ireland @RareDiseasesIE]

@rareireland @sujas15 @RAiNAllIreland @rare_trial

[Debra - The Butterfly Skin Charity @debraireland]

We are the largest supporter of EB research in Ireland. Rare diseases, such as EB, often get overlooked when it comes to the development of new treatments. Debra’s Research team are dedicated to supporting EB research helping to bring potential treatments closer to reality. #EBResearch #ButterflySkin
Learn more here: https://t.co/ztAv650JZ8

[Avril Kennan 🌍 @AvrilKennan]

We don't ask nearly enough of Government & policy makers when it comes to health research, even though it's DIRECTLY linked to healthier & longer lives.
#HealthResearchMatters

Read the @HRCIreland 2024 Position Paper here & join us in asking for better: https://t.co/ZN7esDLpfU

[Debra - The Butterfly Skin Charity @debraireland]

We're looking for a Campaigns and Advocacy Officer.

As a part of the Advocacy, Research and Policy team, you'll play a key role in running all advocacy campaigns, making a meaningful impact for those affected by EB in Ireland.

Your responsibilities include developing and managing campaigns, such as an annual pre-budget submission, Election 2025, and access to medicines initiatives. Exciting opportunities await for a motivated advocacy professional like you! #JobFairy
https://t.co/xLS4gdKIr1