July 16th, 2020

Webinar: Introduction to the ERN EpiCARE ePAG Patient Community

https://us02web.zoom.us/webinar/register/WN_X5s9ZJ6kRTGxs0qLqC17ew

17.00-17.10

Welcome and goal of the webinar.Introduce a few housekeeping points Read the poll questions and comment the poll's results.Close the session.

Isabella Brambilla

17.10-17.20 INTRODUCTION TO ERNs and ePAGs Anne-Laure Aslanian

17.20-17.40 Introduction to EpiCARE ERN EPAG – European Patient Advocacy Group Allison Watson

17.40-17.45 The value of ePAG Epicare …from the physician’s point of view Emma Nott

17.45-18.00 Questions and Answers

Webinar: Introduction to the ERN EpiCARE ePAG Patient Community

Program

Isabella Brambilla

Today's goal is to introduce you to the structure of ERNs and the central role of patients and the activities of our ePAG group within the Epicare network.

ERNs have been teaching us to collaborate even more among us patients with different syndromes but with many common needs. I am proud of the group we have created and the contributions we always try to make to the various working tables.I thank my team for the great teamwork.

RESULTS!

Benefits for patients and caregivers

Creating a network of support for families and patients

Improving the quality of life through shared activities, socialisation and experience

Enriching opportunities tocooperate – enforcing social andhealth support structures

Benefits for research and the scientific community

Acquiring deeper knowledge of the syndrome and its aspects

Improving data collection and optimising research results

Patient organisation GOALS

What can we do for unmet needs?

Quality

of life

Cure

The role of patients’ associations: Data – registry – biobank – survey + daily life info + awareness + knowledge + training for families/school/institutions and rehabilitators + information for families and caregivers

PHYSICIANS

Early diagnosis / best treatment option (how to rebalance the treatment)

RESEARCHERS –PHARMA COMPANIES

New specific drugs?Gene therapy (increase genetics involvement?)

SPECIALISTS –QUALIFIED AWARENESS

Adequate rehabilitation for comorbidities

HEALTHCARE SYSTEM

Support for families and caregivers

PATIENTS CAREGIVERS

ASSOCIATIONS

DOCTORSRESEARCHERS

PHARMACOMPANIES

SOCIAL CARESERVICE

Working together is definitely the best care & cure for RARE DISESE to make a better quality of life possible

Before we start some information:

- You are muted but we invite your comments and questions.

- If you want to interact you can either raise your hand, you will be unmuted to speak, or use the chat. Please look at the chat box on your screen. If you think of a question or a comment for the speakers at any point, just type it in there and we will hold it for the discussion at the end of the session.

- The webinar will be recorded and available on demand. The presentation will be sent to you as well.

INTRODUCTION TO ERNS AND EPAGS

EpiCARE Webinar

16 July 2020

Anne-Laure Aslanian, EURORDIS

1. Introduction to ERNs

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For 85% of people living with a rare disease, the disease impacts upon several aspects of their health and everyday life

EURORDIS. 2017. Juggling care and daily life: The balancing act of the rare disease community. Survey performed via EURORDIS survey initiative Rare Barometer Voices

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1. European Reference Networks (ERNs)

• 24 European Reference Networks were officiallylaunched in 2017

• Connecting 900 expert centres in 300 hospitals in 26 EUMember States to facilitate access to diagnosis,treatment and provide high-quality and cost-effectivehealthcare

• All of them are governed by a Network Board, andthere are ePAG advocates in each of the Boards

Rare Bone 1.

Rare Cancer 2.

Peadatric Cancer 3.

Rare Cardiac 4.

Rare Connective Tissue 5.

Rare Craniofacial & ENT 6.

Rare Endocrinology 7.

Rare & Complex Epilepsy 8.

Rare Eye 9.

Rare Gastrointestinal Diseases 10.

Rare Hematology 11.

Rare Hepatic Diseases 12.

Rare Immunodeficiency, Auto

Inflammatory & Autoimmune Disease 13.

Genetic Tumours 14.

Rare Malformations & Development

Anomalies 15.

Rare Hereditary Metabolic Diseases 16.

Rare Neurology 17.

Rare Neuromuscular 18.

Rare Pulmonary Diseases 19.

Rare & Undiagnosed Skin Disorders 20.

Rare Renal 21.

Transplantation in children 22.

Rare Urogenital Diseases 23.

Rare Multi-systemic Vascular Diseases 24.

ERNs legal basis 2011 Directive on patients’ rights in cross-border healthcare

Specialist Treatment

Specialist Advice

• Virtual healthcare: specialist advice via an online platform (Clinical Patient Management System, CPMS)

• Knowledge generation: sharing experience and expertise, research and innovation

• ERNs are a European Infrastructure for knowledge sharing- Knowledge dissemination: clinical guidelines, healthcare pathways, education and training

Patients ERNNational Healthcare Provider

3. Expertise travels, not the Patient

Note: Slide inspired from Dr Enrique Terol, DG SANTE

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Useful resources

EC ERN webpagehttps://ec.europa.eu/health/ern_en - Here you will find the links to the ERN Delegated Decision (what are the ERNs, what services they should provide) and the ERN Implementation Decision (how - Process for application, members, roles and responsibilities, structure and expansion)

List of 24 ERNsttps://ec.europa.eu/health/ern/networks_en

RD Action (Joint Action for Rare Diseases) http://www.rd-action.eu/european-reference-networks-erns/coordination-of-rare-disease-erns/

ERN Animation clip for patients and health professionalshttps://audiovisual.ec.europa.eu/en/video/I-169786

Video on How the European Reference Networks support health professionalshttps://audiovisual.ec.europa.eu/en/video/I-191812

Video on How the European Reference Networks support patients, with a testimony from Ilaria Galetti, ePAG advocatehttps://audiovisual.ec.europa.eu/en/video/I-191816

2. Role of ePAG advocates and ePAG Community

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1. ePAG Advocates are a resource for ERNs

1. ePAG advocates have a unique knowledge or personal experience of a specific disease. But they will build their legitimacy by engaging with their community and bringing their needs to the table

2. ePAG advocates are the only stakeholder who holds a holistic view of the healthcare process, they have a stake in every stage

3. Bring skills and experience from other sectors, outside the medical/research field

Patient advocates can ensure that ERNs remain truly patient-centric and achieve their main goal: improving the quality of the care that patients receive and their health outcomes.

2. European Patient Advocacy Groups (ePAGs)

https://www.eurordis.org/content/epags

ePAG Community >1000 PO

ePAG Advocates

+290 advocates

24 European Patient Advocacy Groups

ePAG advocates represent the interests and the voice of the wider patient community so that the needs of people living with a rare disease are included in the strategic and operational delivery of the Networks.

ePAG advocates work in partnership with the clinicians and researchers in each EuropeanReference Network. They are the bridge between the ERN and the wider patientcommunity (one foot in the ERN Board and the other foot in the Community).

They provide the patient perspective in the development of:• Registries and research priorities• Clinical practice guidelines and care pathways• Surveys (patient satisfaction)• Patient information, etc.

They advise on overall planning, assessment and evaluation of ERNs’ activities and have ashared leadership and responsibility in the decision-making (ePAG advocates sitting on theNetwork Boards).

More info on the ePAGs and the recruitment of ePAG advocates in the ePAG Constitution

3. ePAG advocates – Mission and role

4. ePAG community – Mission and role

The ePAG community is a group of patient organisations, members and non-members of EURORDIS established in Europe, that has requested to join the group to follow the work of one (or several) ERN.

The ePAG community is not actively involved in the internal network activities, however it is active within its wider patient community and communicates, engages and consults externally to the ERN (via the ePAG advocates):

• Communicating and disseminating ERN activities;• Ensuring feedback on patient experience in the development of guidelines and patient journeys; • Responding to surveys;• Promoting the participation of their patient community in ERN activities; etc.

5. ePAG community – How to join?

Joining an ePAG Community is open to all patient organisations thatregister to be active and engage in one of the ERNs and meet the followingrequisites:

• Represent a rare disease that belongs to the scope of the ERN.• Act in the interests of a relevant specific rare disease community.• Registered and operating in Europe.

To join the EpiCARE ePAG community, a patient organisation shouldcontact EURORDIS by email (anne-laure.aslanian@eurordis.org) or tocomplete the short form here and designate a contact person to receiveinformation and engage with the ePAG.

3. Role of EURORDIS

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EURORDIS supports the establishment and operational delivery of ePAGs. We provide the ePAG Advocates with the necessary tools and training to support them in fulfilling their mission, ensuring regular communication and listening to their opinions.

• Engage with the ePAGs and support the recruitment of new ePAG Advocates and ePAG community members• Provide technical expertise on ERNs, research, digital health, medicine development, etc.• Raise awareness and capacity building for patient representatives and wider community• Engage with National Alliances and European Federations and wider patient community• Be a mediator and arbitrator of issues

EURORDIS Support

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ePAG Section EURORDIS website: here

ePAG Factsheet A brief summary of your role and some key messages for communication purposes (link here)

ePAG Good Practices You will need to scroll down. These are examples of activities that ePAG advocates have developed in the ERNs (link here)

Useful resources

Thank you!

EPAG – European Patient Advocacy Group

Introduction to EpiCARE ERN EPAG

Allison Watson

Overview

What is EpiCARE?

EpiCARE is one of 24 European Reference Networks (or ERN’s) created 9th March 2017 to focus on rare and complex epilepsies.

EpiCARE’s Vision:

To develop and deliver highly-specialized diagnostics and care to improve diagnosis and outcomes in individuals with rare and complex epilepsies.

EpiCARE - 28 full members and 15 affiliated partners in 24 countries

EpiCARE Work Packages (WP)

EpiCARE healthcare pathway

Clinical Patient Management System (CPMS)

CPMS: A secure web-based application used to support the ERN’s in the diagnosis and treatment of rare or low prevalence complex diseases or conditions across national borders.

EpiCARE hosts case discussions twice every month, alternating between surgical and non-surgical cases, with attendees from multiple EpiCARE centres.

Why EPAG?

Every ERN has a European Patient Advocacy Group (EPAG).

EPAG representatives bring the patient voice to the table.

Patient Community

EPAG

EpiCARE ERN

Patient/patient families

Healthcare Professionals

EpiCARE EPAG Representatives

EpiCARE EPAG Patient Advocates that actively participate in meetings, working groups and initiatives.

Allison Watson

Co-chair

Ring20, UK

Isabella Brambilla

Chair

Dravet, IT

Carol-Ann Partridge

CDKL5, UK

Barbara Nicol

Epilepsy Spain, ES

Monica Lucente

GLUT1, IT

Anita Noordhoff

KCNT1, NL

Torie Robinson

Epilepsy Sparks, UK

Rosaria Vavassori

AHC, IT

José Ángel Aibar Dravet, ES

Alva Fontell Finnish Epilepsy Assoc, FI

Emma Nott

Secretary

Hope for HH, UK

Find out more about us on the EpiCARE website here: https://epi-care.eu/epag/

Countries and diseases represented

EPAG Countries

Finland

Italy

Netherlands

Spain

UK

Rare Epilepsies

Glut1 Deficiency syndrome

Hypothalamic Hamartoma

Lennox Gastaut Syndrome

Alternating Hemiplegia of Childhood (AHC)

Ring Chromosome 20 Syndrome

KCNT1 deficit Syndrome

Dravet Syndrome

CDKL5

Unverricht-Lundborg syndrome

Patient Community Countries

France

Belgium

Czech Republic

130 rare and complex epilepsies27 member states in the EU

EpiCARE: EPAG leads, by WP

ePAG involvement in ERN activities

ePAG involvement in ERN activities

Challenges

• New way of working:

• Developing relationships between

• Healthcare Professionals; and

• Patient Advocates

• Demonstrating the value of ePAG skills

• Ensuring the patient perspective is always included

TAKES TIME AND EFFORT

ON BOTH SIDES

ePAG Planned Activities 2020/21Month 1 2 3 4 5 6 7 8 9 10 11 12

Mar Apr May Jun Jul Aug Sep Oct Nov Dec Jan Feb Lead Notes

'20 '20 '20 '20 '20 '20 '20 '20 '20 '20 '21 '21

Phase Social media planning Torie Training and creating rota

One Blog planning Torie Prepare 1st blog/ website link

Barbara update of EpiCARE website (EPAG page)

Webinar prep Jose Introduction to our Patient Community

eNews prep Allison

Patient Journeys - draft and review Allison/ALL Draft infrographic and review

Information leaflets - draft and review Allison/ALL Draft leaflets and review

Rome program Rome posters/presentations Isabella Develop program/prepare for Rome Congress

EPAG survey preparation Emma Prepare 1st EPAG EpiCARE survey

Info leaflets design Alva Graphic design for information leaflets

EJMG EPAG article tbc Article for European Journal for Medical Genetics

Draft manuscript tbc manuscript - common unmet needs

Phase ALL Issue IBE quarterly article

Two Allison/Torie Issue regular Newsletter to Patient Community

delivery Jose Introductory webinar to our Patient Community

Emma Issue survey

Isabella Rome Congress

Social Media Torie/Alva/Jose Social media delivery

Blog delivery Torie/Monica Blog delivery

webinar - unmet needs

prep/

plan

websiteblog page not yet available

IBE Quarterly Newsletter

Link to newsletters:https://www.ibe-epilepsy.org/publications/ie-news-magazine/

Addressing Common Unmet Needs

Following presentation at AGM (Feb ’20)

• Submitted an abstract/poster at ECRD

• Plans to develop into a full manuscript publication

• 8x draft Patient journeys

• Goal: complete for 20 rare epilepsies Yr 4

• Patient Journey Posters to be presented in Rome

• Infographics to be added to EpiCARE website

• Webinar planned for Q3/4 2020

Information leaflets (Education and Training WP)

Following presentation at AGM (Feb ’20)

• Information leaflets drafted for 8 rare epilepsies

• Goal: to complete for 20 rare epilepsies in Year 4

• Information leaflets to be presented in Rome

• Infographics to be added to EpiCARE website

Rome Congress 17-19 DEC 2020

• EPAG presentation topics agreed

• Patient Leaflets to be available

• Patient Journeys to be available

EJMG supplement

• EPAG paper to be written for supplement on Genetic Epilepsies – Nov 2020

Growing our Patient Community (Dissemination WP)

Actively building our Patient Community by:

• Posting on Social Media (Facebook/twitter/LinkedIn)

• Blogs – to commence later this year…

Follow us and join the conversation:

Get involved! And be heard

Call to action:

• Sign up to our EpiCARE ePAG Patient Community TODAY!REGISTER HERE

• Receive regular eNews:• Answer our 1st ePAG EpiCARE Survey including COVID impact (Q3 2020)

• Create your own Information Leaflets

• Develop your own Patient Journey

• Write a blog

• And MORE!

The value of ePAG Epicare …from the physician’s point of view

Emma Nott

Testimonials

“ePAG enables us to have true insight into the needs of patients and their carers, as well as their perception as to the optimal direction of travel.

Prof Helen Cross (EpiCARE Coordinator)”

“The ePAG team for epilepsy care is a major partner of the ERN EpiCARE in:- developing strong links with patient associations across the EU countries;- helping patients and families to better understand the diagnostic complexity of rare epilepsies;- collaborating closely with all health care providers for the discovery of new treatments accessible to all.”

Prof. Alexis Arzimanoglou (EpiCARE Coordinator)

Testimonials

“ePAG EpiCARE activity is essential to build much needed trust between patients and health care providers and to increase knowledge and empowerment among persons and families with rare epilepsies.”

Prof. Reetta Kälviäinen (EpiCARE Steering Committee, Finland)

“Having members from ePAG with us in the steering committee Is the ultimate guarantee to ensuring all our actions are Patient centred.-EPAG members in Epicare are full active members sharing their expertise and helping us to improve Patient comprehensive care.”

Prof. Rima Nabbout (EpiCARE Steering Committee, France)

Testimonials

“It is essential to harness the voice of the six million people living in Europe who are affected by epilepsy. ePAG is uniquely placed to act as a dynamic force for collaboration between the epilepsy patient and the medical field.”

Dr. Ann Little (President, IBE)

Q&A

For more information…

Patient Advocacy page on the EpiCARE website: https://epi-care.eu/epag/

Contact Isabella or Allison at: epag.epicare@gmail.com

We look forward to hearing from you!