EURORDIS-Rare Diseases Europe

Are you living with a rare disease and disability? 💬 We want to hear from you! The latest #RareBarometer survey focuses on the impact of rare diseases on daily life, including experiences with disability recognition and support. Share your story to help us drive positive change in the rare disease community. Available in 25 languages until 8 September. ✅ https://lnkd.in/g_Di3Dvm #RareDiseases #Survey #HolisticCare #SocialParticipation #VulnerableGroups #access #disability

As the #OpenAcademy2024 participants join our community of alumni, we are taking a look back at this year’s trainings! Taking place in June, we welcomed 70+ advocates from 23 countries, along with over 25 faculty, to Barcelona for the intensive in-person training of our Medicines Research and Development School and Scientific Innovation & Translational Research School. 🗣️ The best part? “Engaging with the other participants in a very tangible way. Also, to hear and learn about their various ‘roadmaps’ and stories. Very humbled and inspired. And of course, the actual learnings! I really feel I have learnt a lot which I will be able to apply in my patient advocacy work.” - EURORDIS Open Academy Participant 👉 https://lnkd.in/ey_Q7mVY #EURORDISOpenAcademy #RareDiseases #Europe #training #CapacityBuilding #PatientAdvocacy

There is still time left to register for our upcoming webinar on the role of patients in the design of rare disease care pathways. In healthcare systems, a 'care pathway' is a comprehensive care plan that outlines each step for a specific patient population to ensure they achieve the best outcomes and quality of life safely and efficiently. These pathways form the foundation of our healthcare systems by translating clinical guidelines into practical actions! By sharing best practices from real-world case studies, this webinar will discuss the best ways that patients and their representatives can get involved in the design and development of these pathways. Register now! ➡️ https://lnkd.in/eDPMRfkJ #EuropeanReferenceNetworks #ERNs #RareDiseases #healthcare #JointAction

This is the final call for anyone wishing to submit their application to join the EURORDIS Digital and Data Advisory Group (DAG)! The group’s mandate is to provide expert advice to EURORDIS on all aspects of digital health policies and procedures, based on your personal experience as a member of the rare disease community. The group has contributed to several influential EURORDIS positions in past and will continue to play a key role in shaping patient engagement and patient-centric approaches in numerous European projects such as FACILITATE, JARDIN, and Screen4Care! Applicants must: 🧠 Have a strong interest in digital health 🗣️ Have a high level of fluency in English 🤝 Be an active member in the EURORDIS network 🎓 Have attended at a data and digital training organised by a patient organisation (desirable) Answer the call! ➡️ https://lnkd.in/eEasAw_W #volunteers #data #HealthData #DigitalHealth #RareDiseases

Thank you to the European Economic and Social Committee for inviting our Director of Public Affairs, Valentina Bottarelli, to speak to today’s hearing on their upcoming Opinion "Leaving No One Behind: European Commitment to Rare Diseases”. Ágnes Cser, the EESC Rapporteur, opened today’s first panel by reminding the room of the our community’s high level of unmet needs. 🗣️"Early diagnosis is something that is very important. Families are losing their jobs, they have financial problems and preventable diagnosis can already be achieved in a prenatal stage. I ask you to help us with this opinion." - Ágnes Cser The panel rounded out with contributions from Csaba Kontor, from the Hungarian Presidency of the Council of the EU, and Fulvia Raffaelli, Head of Digital Health at DG SANTE promising continued commitment to rare disease policy advancements. Most notably, Enrique Terol, Health Attaché from the Spanish Permanent Representation to the EU, stressed that there’s a long way to go towards an EU Action Plan on Rare Diseases, but we still need a structured roadmap - “a plan to build The Plan.” The second panel opened with our own Valentina Bottarelli reiterating Mr Terol’s sentiments and underlining the urgently needed actions detailed in our #ActRare2024 priorities. The discussion concluded with Victoria Hedley, Rare Disease Policy Manager, highlighting the importance of national-level plans to progress, and Anne-Sophie Lapointe (PhD) presenting some best practices from France. 🗣️ “The rest of the world look at the EU for national plans.” - Victoria Hedley We now eargerly await the EESC Opinion! 🤝

Do you want to showcase an example of patient-clinician collaboration in your European Reference Network (ERN)? Are you aware of any innovative approaches to implementing patient partnership in your expert centres? 🙋 To help foster peer learning on patient partnership in the ERNs, we are excited to be launching a contest to select six patient partnership good practice case studies to take part in our Patient Partnership Webinar series in 2025. All the practices will be presented in a dedicated webinar and the three receiving the highest scores be awarded with the chance to have their printable material(s) created by a professional graphic designer! A Selection Committee will be established to review the good practices and score them against the Patient Partnership Good Practices Criteria (available on our website). Entries should be submitted by 31 October, 2024, as per the instructions. Only properly formatted applications can be considered. 👉 https://lnkd.in/dnvgVJxx #PatientEngagement #PatientPartnership #RareDiseases #ePAG #ERNs

By asking about your participation in daily activities such as school, leisure, and work, and understanding what you need to live your life to the fullest, we can better grasp your needs. This will empower us to advocate for people with rare diseases to access their rights and address the often overlooked challenges they face. The new #RareBarometer survey on the impacts of living with a rare disease on daily life will gather insights from the rare disease community to: ▶️ Estimate levels of social participation and identify factors influencing engagement in activities such as school, leisure, and work. ▶️ Understand preferences and needs related to independent living. ▶️ Collect experiences with disability assessment processes. ▶️ Identify key barriers and facilitators to accessing social and disability rights. Designed with input from a committee of experts in social participation, independent living, and disability, this survey will provide valuable data to EURORDIS and its members, enabling them to design effective advocacy strategies and actions to reduce social vulnerability. From today until September 8, this global survey is available in 25 languages, and open to all individuals living with a rare disease and their family members. Join us in making a difference! 🌍 https://lnkd.in/g_Di3Dvm Help us spread the word! Use our communication toolkit to help you encourage your network to participate. The more respondents we have, the stronger our voice will be! #RareDiseases #Survey #HolisticCare #SocialParticipation #VulnerableGroups #access #disability

In health systems, a ‘care pathway’ is a detailed care plan, charting each step for a specific patient population to make sure they safely and efficiently reach the best outcomes and quality of life. They are the foundation of our healthcare systems. They put clinical guidelines into action. The European Reference Networks (ERNs) are collaborating with national authorities under the new EU Joint Action for Integration (JARDIN) to develop ERN care pathways, that can be tailored and adopted locally in national healthcare systems. But what is the role of patients and their representatives in the design and development of rare disease care pathways? This webinar will provide an introduction to care pathways and share the best practice methodology for care pathway development based on real world experiences! Find out more ➡️ https://lnkd.in/eDPMRfkJ #EuropeanReferenceNetworks #ERNs #RareDiseases #healthcare #JointAction

Our thoughts are with our friends and colleagues at Ohmatdyt Children’s Hospital in Ukraine, which was targeted by a missile attack this morning. At least 24 casualties have been reported so far. For over 15 years, Ohmatdyt has been home to the Centre for Rare Diseases and Gene Therapy, providing essential care to children from all over Ukraine. The centre specialises in diagnosing and treating metabolic and neuromuscular diseases, cystic fibrosis, and other rare conditions. In response to the growing needs of the rare disease community, since 2022, the hospital has also housed the "Rare Disease Hub Ukraine." This hub provides critical assistance to displaced Ukrainians living with rare diseases, supported by Ukraine’s Ministry of Health, EURORDIS, and the European Commission. Moreover, our partners at Ohmatdyt have been instrumental in fostering EU-Ukraine collaborations in the field of rare diseases. The EU Joint Action on Integrating ERNs into National Health Systems (JARDIN) includes Ukraine as an associate partner, facilitating the exchange of knowledge and expertise between Ukrainian patients and clinicians and their EU counterparts. We are closely monitoring the situation and hope for the safety and wellbeing of all patients and healthcare providers during these difficult times. If you would like to support the hospital’s efforts during this challenging period, please use the link below: 🔗 https://lnkd.in/euMsVYnX 📸 Photos of EURORDIS colleagues visiting Ohmatdyt hospital in February 2024 to mark Rare Disease Day.

Do you or someone in your network know of an innovative creative agency or freelancer who is up to the task of elevating our brand identity to ensure it aligns seamlessly with our goals, embodies modern design standards, and effectively reaches a broad audience? There are just two days left to respond to our call for tender and submit your proposals for the upcoming EURORDIS brand refresh and development. 💶 Project budget: €6,000, inclusive of VAT and expenses ⏰ Deadline for submission: 10 July 2024 📑 Full brief: https://lnkd.in/e2NGNSBm #hiring #RareDiseases #Europe #branding #vision #mission