DEBRA International

📣 Calling all parents of EB children in Europe 📣 Do you have a spare 12-15 minutes? Enpr-EMA Cross-border access to clinical trials Working Group (WG) need your help to create future guidance in Europe for children and young people in cross-border clinical trials, including language barriers. DEADLINE: 31ST JULY 2024 If you have no experience of participating in a clinical trial, you can participate here: https://lnkd.in/dJrzpbPB

How does EB impact your everyday life? How well can you access vital health care services? BUR-EB want to hear about the real burden of living with EB and how it affects you, including: 🦋 your quality of life 🦋 access to and satisfaction with social and healthcare services 🦋 the costs of healthcare and informal care 🦋 the financial impact on families 🦋 productivity losses BUR-EB are collecting information on the resources you use and how the disease affects your life, as well as the burden of the main caregiver, to help improve the care of those with EB. Please share – we need as many people in Austria, Bulgaria, France, Germany, Hungary, Italy and Spain to take part as possible! Please only complete the survey if you are from one of these countries. Complete the anonymous survey by end of August 2024: https://lnkd.in/e4STK96g #epidermolysisbullosa #EBresearch #BUREB

How does EB impact your everyday life? How well can you access vital health care services? What is the financial impact of having EB? BUR-EB want to answer all these questions and more, to find out about the real burden of living with EB and how it affects you, including; ➡️ your quality of life ➡️ access to and satisfaction with social and healthcare services ➡️ the costs of healthcare and informal care ➡️ the financial impact on families ➡️ productivity losses BUR-EB are collecting information on the resources used and how the disease affects your life, as well as the burden of the main caregiver, to help improve the care of those with EB. This survey is only available to those in Austria, Bulgaria, France, Germany, Hungary, Italy or Spain. Please share with your EB communities – we need as many people to take part as possible! Complete the anonymous survey by end of August 2024: https://lnkd.in/e4STK96g #epidermolysisbullosa #EBresearch #BUREB

We are pleased to share the 1st MENA Region and African International EB Congress report, which took place in Cairo at the end of April 2024. The report shares summaries of each of the themed day's session. Throughout the report are photos of the Congress, the EB Talent Exhibition and the array of engrossing evening networking events. As well, don't miss the Congress facts and figures; find out who attended and from where, more about the speakers and grants provided along with a thanks to sponsors, friends and endorsers and more information about the DEBRA International Youth Council's patient seminar. Thank you to the 55 international and local speakers for sharing their valuable experiences, knowledge, and research. We would also like to thank all of the companies and organisations that sponsored and endorsed the Congress. Thank you to all of the attendees for the high engagement with sessions, insightful discussions and creating such a collaborative atmosphere. The #EBCongress2024 highlighted the need for DEBRA's presence across the Middle East and Africa, and the DEBRA International team look forward to embarking upon this journey, continuing to drive progress and build upon the connections made. Read the full report here 👉🏻👉🏽👉🏾 https://lnkd.in/e6QxfNem

Join DEBRA Singapore, DEBRA International & PFMD .org for the second session of the popular PE101 webinar series: EVIDENCE-BASED ADVOCACY - An Introduction. 📆 Wednesday 24th July 2024 🕧️12:30 PM CET / 6:30 PM SGT 📍Online This second webinar is crafted as a “beginner guide” for patients and caregivers who are approaching their Patient Engagement journey, defining what "evidence-based" advocacy is and mapping out the community's key challenges in their daily activities to brainstorm solutions with the speakers. Speakers at the interactive and conversational session will share experiences and attempt to respond to as many participant questions as possible to inspire action. Find out more and sign up for free 👇🏼👇🏽👇🏾 https://lnkd.in/eZKCfqUw

⏰ Don't miss out! ⏰ This is the LAST CHANCE to have your say on EB research by taking part in the #ebpriorities survey. It only takes 12 minutes to be a part of shaping the future of EB research and complete the survey. We are asking everyone involved in EB – patients, their friends and families, carers and healthcare professionals – to let us know what questions most need answering to improve care and treatment for EB. Please share the survey with them! Survey closes Friday 28th June ‼️ ⬇️ https://lnkd.in/ei8ZMM_P? #epidermolysisbullosa #EBresearch #JamesLindAlliance #PrioritySettingPartnership #EBpriorities #fragileskin #EBlife #butterflyskin #PSP #eb #eblife #livingwithEB #butterflydisease #fightEB

The deadline to complete the global #EBpriorities survey has been extended until Friday 28th June! Don't miss your chance to have your say in shaping the future of EB research. Please share this post! We need as many people to take part as possible. See how to easily translate the survey into any language below. تعرف على كيفية ترجمة الاستبيان إلى لغتك بسهولة. يجب ترجمة جميع الإجابات إلى اللغة الإنجليزية.➡️🇦🇪 🇨🇳➡️ 了解如何轻松地将调查问卷翻译成您的语言。所有答案必须翻译回英语。 🇵🇹➡️ Veja como traduzir facilmente o inquérito para a sua língua. Todas as respostas devem ser traduzidas de volta para o inglês. 🇪🇸➡️ Vea cómo traducir fácilmente la encuesta a su idioma. Todas las respuestas deben traducirse de nuevo al inglés. We are asking everyone involved in EB – patients, their friends and families, and healthcare professionals – to get involved and share which questions most need answering to improve care and treatment for EB. https://lnkd.in/ei8ZMM_P #epidermolysisbullosa #EBresearch #JamesLindAlliance #PrioritySettingPartnership #EBpriorities

Congratulation to RDI's three new and re-elected Council Members, who were announced at our Annual General Assembly today: Ritu Jain of DEBRA International, Kelly du Plessis of Rare Diseases South Africa and Nadiah Hanim Abdul Latif of Malaysian Rare Disorders Society. We look forward to another fruitful and productive year supporting the global Rare Disease Community together with our Council. Find out more about RDI's Council here: https://lnkd.in/dNDS7R57

📢 Have your say in shaping the future of EB research! Complete the #EBpriorities survey to help identify the important, unanswered questions about EB, and shape the future of EB research. We want to hear from people living with all types of EB, their family members, and healthcare professionals. Complete the survey: bit.ly/3yAvKFS Please do share this survey too, we’d love to hear from as many people as possible! #JamesLindAlliance James Lind Alliance DEBRA International

Are you or someone you know affected by EB? What would you like EB research to focus on? Complete the #EBpriorities survey to help identify the important, unanswered questions about EB, and shape the future of #EBresearch! This survey is for everyone involved in EB worldwide – people with EB, family and friends of someone with EB, healthcare professionals, researchers – and only takes 12 minutes to complete! Please share – we need as many people to take part as possible! Tell us your unanswered questions here or comment below by Monday 24th June 2024: https://lnkd.in/erJVT5wB 🇬🇧 All answers received must be in English. Use your browser’s built-in translator to translate the survey pages, and DeepL to translate your answers into English. 🇪🇸 Todas las respuestas recibidas deben estar en inglés. Utilice el traductor integrado en su navegador para traducir las páginas de la encuesta, y una herramienta de traducción para traducir sus respuestas al inglés 🇵🇹  Todas as respostas recebidas devem ser em inglês. Utilize o tradutor integrado no seu browser para traduzir as páginas do inquérito e uma ferramenta de tradução para traduzir as suas respostas para inglês. يجب أن تكون جميع الردود الواردة باللغة الإنجليزية. استخدم المترجم المدمج في متصفحك لترجمة صفحات الاستبيان، وأداة الترجمة لترجمة إجاباتك إلى اللغة الإنجليزية. 🇦🇪 🇨🇳 收到的所有答复必须使用英语。请使用浏览器的内置翻译器翻译调查页面，并使用翻译工具将您的答案翻译成英文。 #epidermolysisbullosa #EBresearch