🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

The mother of a 19-year-old woman with recessive dystrophic Epidermolysis Bullosa, leaving 80% of her body covered in open wounds, has said they have 'been cast aside again' after EB patients received no additional funding in Budget 2024 rte.ie/news/2023/1024…

75 more signatures needed before we reach our target of 3,000 If you haven't already done so already please add your name to this incredibly important Petition for Women’s #BreastcancerScreening #WomensHealth #FridayFeeling change.org/p/petition-the… via Change.org

RARE DISEASE CLINICAL TRIALS CONFERENCE 🔬🧬 Join global experts, researchers and advocates to explore the forefront of rare disease clinical research 📍The Grand Hotel, Malahide, Dublin, Ireland 🗓️ 29 Feb - 1 March 2024 👥 All welcome! REGISTER HERE: forms.gle/sozhmyvjQowL8N…

RARE Ireland Dr Suja Somanadhan RAiN Rare Disease Clinical Trial Network, Ireland

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

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 Health Research Charities Ireland - HRCI 2024 Position Paper here & join us in asking for better: lnkd.in/e2bctSRJ

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.

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 👉 bit.ly/3SEggIC #ResearchFunding #Research

Dr Linzi Ryan from Maynooth University 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

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 Rare Diseases Ireland. To find out more information, and register your interest please follow the link:

Today, on the eve of #RareDiseaseDay2024, Debra’s Head of Advocacy, Research and Policy Sinead Hickey 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

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) tinyurl.com/HSETOC Brought to you by [email protected]

🚨Research Opportunity!🚨 Trainee Psychologist Sarah Downey 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

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. ‼️🆕👉emea.focusvision.com/survey/selfser…

Our Research Team Sinead Hickey Sarah Mullins are attending #WCRD2024 today to learn more about updates in #EB research and promote our ‘Life with EB’ report 🦋 #healthresearchmatters #raredisease

🚀 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: rarediseaseresearch.ie/funding-opport…

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 hrci.ie/annual-report-… RT's appreciated! #HealthResearchMatters

To mark her 40th birthday, Colin Farrell is taking on Emma's Run to 40 by running the Irish Life Dublin Marathon in honour of his dear friend 👟. Together, they hope to raise €400,000 for Debra, supporting those with EB. 🦋 #Runto40 👟 Get involved 👉 bit.ly/Runto40

🚨 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: shorturl.at/m6P9G #EBButterflyReview #YourVoiceMatters #EBCare

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 hrci.ie/joint-funding-… #HealthResearchMatters