Are we ready for the next call of ERNs? Dorica Dan (president APWR, ANBRaRo și ARCrare). Noro center
Why do we organize this meeting? Our expectations … To find out if we are ready for the new ERN call To encourage the experts, clinics and HCP to join efforts and apply for accreditation of their services as CoE Increased access to accurate diagnosis, timely advice and care Increasing the visible expert teams a magnet for attracting complex cases Improve collaboration between services to ensure continuity of care
Realities and challenges There are over 6000 diseases which are rare. The challenges of rarity : Patients are rare &Experts & expertise are rare Centres of Expertise (CoE) reveal where expertise lies and gather the existing experience to improve patient care. Nationally designated CoE are the core elements of RD ERNs. To organise the healthcare pathways at national and EU level for RDs, it is necessary to build networks. CoE can have very different structures ERNs have to be flexible to integrate these differences.
ERNs provide: Indirect coordination services Virtual healthcare: eHealth clinical services Cross-border clinical services - CPMS Common guidelines? Network and coordination services Knowledge generation services Knowledge dissemination services
http://ec. europa. eu/avservices/video/player. cfm http://ec.europa.eu/avservices/video/player.cfm?sitelang=en&ref=I134312
How do we organize this event? 1ST DAY – Professionals and HCP 2ND DAY – Patients and patients’ organisations
Why do we organize this event? As patients, we are already involved.. As organization… Information: websituri: www.apwromania.ro www.arcrare.ro, www.bolirareromania.ro; www.eurordis.org; www.rarediseaseday.org; Therapies: Day care, Residential center, groups of patients; Training:( eLearning): www.edubolirare.ro, www.aspac.ro; Communication: www.radionoro.ro, Facebook, Blogs, campaigns (RDD), www.rjrd.ro, videoconference tool; Virtual services: Face2Gene, MIRA Rehab, London Medical Database, Registrul NoRo, HelpLine NoRo RD Connect: www.rdconnect.org, https://www.rareconnect.org https://cpms.ern-net.eu Networks: IPWSO, EURORDIS, COPAC, CNBR, Eurordis Network of Helplines CoE, RO-NMCA ID; ERN ITHACA, RareResourceNet
Where are we? The first 24 ERNs covering 24 different clinical areas were officially approved by the European Commission (EC) on December 2016 and started their activity 1st March 2017. European …
Patients Registry of NoRo Center
www.edubolirare.ro www.aspac.ro
www.participrare.ro www.radionoro.ro HelpLine NoRo
NoRo Story: https://drive.google.com/file/d/0BwbsYEooKmnmdElLQTdMTzViUms/view
https://www.youtube.com/watch?v=7bnCobL_t-U