On the occasion of Rare Diseases Day, on 28 February 2018, the European Reference Network for Rare Bone Disorders (ERN-BOND) coordinated by Luca Sangiorgi (IT), with the kind support of EURORDIS, organized a European Parliamentary Meeting entitled: European Reference Networks – Accelerating and Improving Diagnosis for Rare Diseases Patients. The meeting was kindly hosted by MEP Elena Gentile (S&D, IT).
The event was aimed to present the findings of the ERN-BOND White Paper on Diagnosis and discuss solutions on how to best reduce the average time to accurate diagnosis for rare bone diseases and, more generally, Rare Diseases.
Dr. Vytenis Andriukaitis, European Commissioner for Health and Food Safety, was one of the speakers invited to participate in the meeting to celebrate one year of success of the 24 ERNs that are now operating across Europe. In his talk he expressed grateful for the continuous work that ERNs are doing for patients, alongside healthcare professionals, researchers, policy makers and hospital managers – working together to improve the quality of life of millions of people in Europe suffering from a Rare Disease.
To read the full speech of Dr. Vytenis Andriukaitis, click here
In the second part of the meeting
- Luca Sangiorgi, ERN-BOND Coordinator, Istituto Ortopedico Rizzoli, Italy
- Maurizio Scarpa, Chair, ERN Coordinators Group and Coordinator of MetabERN
- Yann Le Cam, Chief Executive Officer, EURORDIS – Rare Diseases Europe
- Martin Seychell, Deputy Director General of the Directorate-General for Health and Food Safety
Took part in the Panel discussion entitled How to address the challenges of early diagnosis of rare diseases moderated by Josep Figueras, Director of the European Observatory on Health Systems and Policies.
From the discussion it appeared that political intention and support at all governance levels (local, national, European/regional and international) is seen as crucial for prioritising the key issues of early diagnosis of Rare Diseases.
To read a more complete report click here
To read the ERN-BOND Final White Paper click here
