1. Are we ready for the next call of ERNs?
Dorica Dan (president APWR, ANBRaRo și ARCrare).
Noro center

2. 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

3. 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.

4. 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

5. http://ec. europa. eu/avservices/video/player. cfm

6. How do we organize this event?
1ST DAY – Professionals and HCP
2ND DAY – Patients and patients’ organisations 

7. Why do we organize this event?
As patients, we are already involved.. As organization…
Information: websituri:
Therapies: Day care, Residential center, groups of patients;
Training:( eLearning):
Communication: Facebook,
Blogs, campaigns (RDD), videoconference tool;
Virtual services: Face2Gene, MIRA Rehab,
London Medical Database, Registrul NoRo, HelpLine NoRo
RD Connect:
Networks: IPWSO, EURORDIS, COPAC, CNBR,
Eurordis Network of Helplines
CoE, RO-NMCA ID; ERN ITHACA, RareResourceNet

8. 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 …

9. Patients Registry of NoRo Center

10. www.edubolirare.ro www.aspac.ro

11. www.participrare.ro www.radionoro.ro
HelpLine NoRo

13. NoRo Story: