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ERN-EYE THE JOURNEY SO FAR
Avril Daly
CEO Retina International
VP EURORDIS
3rd ERN Conference – Vilnius. March 9th
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A Sensible Route to Diagnosis and Care!
Improve care of EU citizens with
Rare Eye Diseases –
■ Urgent need to coordinate
care for patients with Rare Eye
Diseases through EUROPEAN
REFERENCE NETWORK (ERN)
■ 30 HCPs applied in
■ 13 member states
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Our Big Audacious Goals for ERN-EYE -
A New Focus on THE EYE
■ Improve trajectory for patients with Rare Eye Disease n the EU
■ Reduce the time to diagnosis and care
■ Secure accurate diagnosis for the undiagnosed patient population
■ Ensure molecular diagnosis to the largest number of patients
■ Reduce inequality and improve access to high quality care in the EU
■ Facilitate involvement of patients in clinical trials
■ Enable access to innovation and faster generation of knowledge, evidence base and research
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But Which Rare Eye Diseases?
■ Rare Retinal Disease
■ Neuro Ophthalmology
■ Paediatric Ophthalmology and Rare Eye Immune Diseases
■ Anterior Segment
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PUTTING THE PUZZLE TOGETHER – BOTTOM UP
APPROACH
Together – The patients agree next steps!
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■ Opportunity of first announcement and presentation at EURORDIS AGM – Madrid 2015
■ Meeting with patients representing all rare eye disease areas on process
■ Agreed RI would organise meeting with learned societies and patients
First Things First!
Need to Publicise the ERN Process to Patients and Learned Societies
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EURetina, Nice, September 2015 -
Over 5,000 Eye Care Specialists in EU and Beyond
2 Round Tables and one patient
symposium organised
■ 1st Round table - European
ophthalmology specialists and
clinical researchers potential
of ERN process for the
community
■ 2nd Round table - patient
representatives to discuss
patient role and advocacy
activities
■ A Patient Symposium on ERN
process – a first for the
conference
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Initial Meeting Ophthalmologists and Patient Representatives –
Zurich, February 26th
2016
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Attention Turns to ePAG Elections –
March 2016
The nominated ePAG members represent 4 patient groups:
■ Christina Fasser (Retina International, Switzerland)
■ Michael Längsfeld (PRO RETINA Deutschland, Germany)
■ Paula Morandi (Mitocon Onlus, Italy)
■ Gaëlle Jouanjan (France & Anirida Europe, France)
■ Daniela Brohlburg (ProRetina Deutschland, Germany)
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Kick Off Meeting ERN-EYE Applicants at Hub –
Strasbourg April 18, 2016
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LEAVE THE SCIENTIFIC AND CLINICAL DECISIONS TO PROFESSIONALS–
BUT ALWAYS WITH PATIENT REPRESENTED FOR ADVICE AND SUPPORT!
True meaning of collaboration……
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Accreditation –December 2016
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Now -
Need to Focus on Further Development of ERN-EYE ePAG
Patients must be represented across
committees of ERN-EYE
■ Significant undertaking to raise
awareness
■ A mapping exercise reaching out to
30 groups acting for the Vision
Impaired in Europe -January 2017
to ensure a broad representation of
patients
■ Two patient representatives willing
to go forward for election spring
2017
■ Many interested but concerned
about lack of resource and support,
will watch with interest
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Looking to the Future of Patient Representation and Leadership!
ERNs are a - Hub and Spoke Model
■ Patients will need to be involved
centrally, on various committees
but it is critical there is good
representation on national HCPs
■ This will require a step wise
process of awareness,
engagement and education
■ ePAGs are charged with the
development of ePAGs centrally
and locally
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MUST PROVIDE LEADERSHIP, TRAINING AND EDUCATION ON
COMPLEX SUBJECTS
But How?
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Building on Patient Knowledge and Expertise -Effective Collaborative ERNs
■ EURORDIS will develop training and leadership modules to support ePAGmembers to in the operational development and delivery of ERNs
■ To ensure effective participation in complex areas EURORIDS will develop transversal Focus Groups on specific areas across all ERNs e.g. Research & Registers, Clinical Outcomes & Guidelines.
■ The Focus Groups will provide the opportunity to brain storm, share learning and experience across ERNs will be critical
■ EURORDIS experts will chair appropriate groups to ensure transfer of most up to date information on specific areas .
■ Focus Groups will work across ERNs where appropriate
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MAKING PATIENT EXPERTISE VISIBLE ACROSS EUROPE
EURORDIS Commitment to Patients!
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European Patient Advocacy Groups –
A Model of True Patient Engagement
■ To ensure ERNs are anchored into national
health systems
■ To connect knowledge and experience of
leading clinicians, researchers and
patients to generate knowledge
■ To eliminate the diagnostic odyssey
■ To have open access to leading treatment
locally, prescribed against evidence based
guidelines
■ To ensure transparency of outcomes of
care to drive quality improvement
■ To create a critical mass of patients and
data, pushing the pace of research and
evidence based practice
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THANK YOU!And good luck to all!