VASCERN represented by our ePAG representatives at ECRD 2018!

The 9th European Conference on Rare Diseases and Orphan Products (ECRD) took place from May 10-12, 2018 in Vienna Austria. This conference brought together all stakeholders from the rare disease community in order to discuss topics on research, treatment development, healthcare, social care, public health policies and support at European, national, regional and international levels. It was organised by Eurordis and co-organised by Orphanet and DIA.

VASCERN was very happy to be represented at this event by members of our European Patient Advocacy Group (ePAG) including the five Rare Disease Working Group ePAG Co-Chairs: Claudia Crocione (HHT-WG), Lise Murphy (HTAD-WG), Juergen Grunert (MSA-WG), Natascha Assies (PPL-WG) and Caroline van den Bosch (VASCA-WG). They presented a beautiful poster entitled “Patient Involvement on vascular anomalies in the European Reference Network VASCERN”.

Claudia Crocione (ePAG Co-Chair for the HHT-WG) gave a presentation on “Patients and the Digital Revolution” where she outlined the experience of ePAG participation in the creation of the VASCERN mobile APP (coming soon).

We were also very happy to have our VASCERN poster on display at this international event.

This year’s overall theme was “Rare Diseases 360°―Collaborative Strategies to Leave No One Behind” with 6 sub-themes: breakthrough medicines on the horizon, quality of life, the digital patient, structuring the research and diagnosis landscape, economic perspectives in rare diseases, and global rare equity. The European reference networks (ERNs) were a hot topic as was the success of the Clinical Patient Management System, the secure web-base application supporting ERNs in their implementation of cross-border virtual consultations.

This event gave participants the unique opportunity to look towards the future while witnessing first hand what can be achieved through close collaboration with all involved stakeholders of the rare disease community.

To see all of the posters presented at the ECRD 2018, click here.

To watch videos from the opening and plenary sessions of the ECRD on Friday May 11th, 2018, that was live streamed, click here.

 

 

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