EURORDIS-Rare Diseases Europe’s Post

🚨 Last chance! 🚨 There is just one week left to apply for one of the open positions in our Digital and Data Advisory Group (DAG). The group offers EURORDIS expert guidance on all facets of digital health policies and procedures, drawing on members' personal experiences to shape our policies and seize opportunities for individuals with rare diseases. So far, the group has significantly contributed to several influential EURORDIS positions and has been instrumental in developing our patient-centric strategies for numerous European projects, including FACILITATE, JARDIN, and Screen4Care. Do you want to part of it? Think you have something to contribute? ⏰ Apply by 30 June. Learn more: https://lnkd.in/eEasAw_W #volunteers #data #HealthData #DigitalHealth #RareDiseases

Don’t miss out on our EHDS training series! The European Health Data Space (EHDS) is a proposed EU regulatory framework that represents a significant legislative step towards optimising data usage and sharing practices across the EU. By grasping how the EHDS directly impacts the management and utilisation of health data, patient advocates can unlock new opportunities to improve patient care and advocacy. Join us in two days for the first session of our training series, hosted by EURORDIS Data Director, Jelena Malinina. These sessions are carefully designed to equip you with a deeper understanding of the EHDS, its functions, and what it will mean for your work! 🔎 Training Session 1: How does the EHDS work? 📅 30 September 2024, 2:00 pm CET 🌟Important: You must attend this first session to be eligible for the second and third sessions on Primary and Secondary Data. ➡️ Register for any of our sessions now: https://lnkd.in/e94X2Hig #data #RareDiseases #research #EHDS #EuropeanHealthDataSpace

CLSA-HDRN Canada collaboration enables linkage of CLSA data with provincial health-care registries to facilitate research and health-care policy making in Canada

Did you take part in our brain teaser poll last week? Last week's brainteaser focused on Africa's most commonly used Electronic Health Record (EHR). EHRs are digital forms of patients' medical history, treatment plans, and other essential health information. Despite the limited resources and widespread infrastructure deficit, African countries are making progress in implementing EHRs, especially disease-specific and surveillance-based EHRs. These are the three commonly used open-source EHRs in Africa: District Health Information System 2 (#DHIS2) Open Medical Records System (#OpenMRS) #Bahmni. DHIS2 was first implemented at the national level in African countries such as Ghana, Rwanda, and Kenya. It is most commonly used on the continent.

12 years in 6 weeks: 1. Packaging evidence Our Maternal and Perinatal Death Surveillance and Response (#MPDSR) Action Tracker was developed in response to stakeholder demand for a simple tool that enables users to keep track of actions that emerge from MPDSR Committee meetings. By organising and presenting evidence clearly, the tracker facilitates informed decision-making and improves accountability. Access the tool here to find out how to track action!

Bahmni EMR usage across the continent of Africa in a map! #opensource #emr #digitalHealth #africa Bahmni EMR!

Today is recommendations day at the ESCA Health Community conference. Based on the deliberations, FP2030, Knowledge Success, and PPD ARO have crafted and submitted two broad recommendations on AYSRH to be taken up to the Health Ministers Committee: 1. Integrate and implement robust knowledge management systems as mechanisms for accelerated implementation of AY and SRH Policies 2. Urge member states to commit to Regional/ Global AYSRH related commitments, including FP2030 goals, and integrate FP/SRH components into national emergency preparedness and response plans to maintain service continuity.

🖥️ Do you have personal experience of situations impacted by digital health policy? 💭 Do you have ideas on how they could have been improved? 🫵 We want to hear from you! The application window has been extended for the EURORDIS Digital and Data Advisory Group (DAG). The group provides us with expert guidance on all facets of digital health policy and procedures, drawing on members' personal experiences to shape our advocacy actions. If you have something to contribute apply before 15 July 2024. ➡️ https://lnkd.in/eEasAw_W #volunteers #data #HealthData #DigitalHealth #RareDiseases

Dear members, We trust this message finds you well! We're excited to update you on the recent developments in our WP on Policy Advocacy across Europe. Group Highlights: Engagement: WONCA Europe WP on Policy Advocacy at the “Health workforce challenges: Ways forward for policy making” symposium. The virtual meeting was attended by 242 participants on the 27th of January and our question was taken into account and answered: "How can the EU invest in training professionals in primary care and create attractive conditions for these professionals, particularly in rural areas?". Read the full report here. Upcoming WONCA Europe WP Meeting: Mark your calendars for our next meeting on the 21st of March 2024 at 17:00h CET. To join us, click here: ZOOM Call for volunteers for European Commission Surveys: We are seeking family doctors with experience in any of the following topics:   Cancer, Non-communicable diseases, Infectious diseases, Vaccination, Mental Health, Public Health, Digital Health, Women's health, Rural health, Drugs/treatments, Emergency Preparedness and Response, Planetary Health, Education and Training, Research, Innovation, Electronic health,  record, Family violence (Intimate partner violence, child abuse, elderly abuse, etc.), Health economics, Vulnerable population (migrants, racial or ethnic minorities, socioeconomically disadvantaged people), Prevention, Family doctor's workforce, International cooperation and development, Statistics, Universal health care coverage. For more information, click here.

FDA publishes report on public meeting about mitigating clinical study disruptions during disasters and public health emergencies   The Food and Drug Administration is announcing it published the report on topics discussed at the October 18–19, 2023, public meeting, "Mitigating Clinical Study Disruptions During Disasters and Public Health Emergencies (PHEs)."  The report provides a summary of the meeting and satisfies a mandate under Section 3605(b) of the Food and Drug Omnibus Reform Act of 2022 (FDORA) to “make available on the public website of the Food and Drug Administration a report on the topics discussed at such meeting, not later than 90 days after the date on which the public meeting is convened.”  Virtual public meeting recordings and presentations are available at FDORA 3605 Public Meeting – Mitigating Clinical Study Disruptions During Disasters and Public Health Emergencies. #fda #disruption #mitigation #clinicalstudy #disaster #emergency https://lnkd.in/gEZZ7ae4