www.eurordis.org
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS ECRD 2012 Brussels 23 – 25 May 2012 Sharon Ashton Event Manager EURORDIS
Paris, November 2011
EURORDIS GALA DINNER EURORDIS GALA DINNER CONTENT Solidarity & Hope for Rare Disease Patients Throughout Europe
1. ECRD 2012: name change, dates and venue 2. Conference Partners 3. Conference Format 4. EURORDIS Membership Meeting forums and workshops 5. Conference Themes 6. Role of National Alliances & European Federations 2
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
1.ECRD 2012 Brussels: name change, dates and venue
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
NAME CHANGE
European Conference on Rare Diseases & Orphan Products
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
DATES AND VENUE
ECRD 2012 Brussels Wednesday – Thursday – Friday 23 – 25 May 2012 Management Centre Europe (MCE) Conference Centre Brussels, Belgium 5
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
ECRD 2012 BRUSSELS VENUE
Spacious foyer/lunch/coffee break/poster area Plenary for up to 700 people 6 integrated translation booths in plenary room 38 additional meeting rooms of different sizes
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
2. Conference Partners
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EURORDIS OFFICIAL GALA PARTNERS DINNER EURORDIS GALA DINNER CONCEPT Solidarity & Hope for Rare Disease Patients Throughout Europe
• EURORDIS (organiser) • DIA (co-organiser) • EUCERD (European Committee of Experts on Rare Diseases)
• EMA /COMP (European Medicines Agency / Committee Orphan Medicinal Products)
• ORPHANET • ESHG (European Society of Human Genetics) • EuropaBio-EBE/EFPIA • NORD 8
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
3. Conference Format
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
OVERALL FORMAT Day 1: A Pre-Conference Day with multiple parallel activities - Satellite Workshops e.g. Orphanet, Epirare, BURQOL-RD, etc. - EURORDIS’s Membership Meeting: Patient Advocates Capacity Building Sessions + Annual General Assembly - DIA Tutorials for industry and academia (open to patient advocates) Day 2: The « core » of the Conference for all - Plenary - Parallel Sessions - Posters Session & exhibit (table tops) Day 3: The « core of the Conference for all » - Parallel Sessions - Posters Session & exhibit (table tops) Structured networking opportunities throughout the three days 10
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
4. EURORDIS Membership Meeting forums and workshops
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
INFORMATION EXCHANGE FORUMS
1. Fundraising for rare disease patient groups 2. Rare Disease Day: experience of local patient 3. 4. 5. 6.
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groups, national alliances and European federations Advocacy for Public Affairs: experience of patient groups to promote access to medicines How to create a disease specific European Federation or European network Training and EURORDIS’ activities on drug development and access EURORDIS’ activities on EU and National Policies
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
CAPACITY-BUILDING WORKSHOPS
1. Online rare disease communities 2. Regulatory – how to work with your National 3. 4. 5. 6. 13
Competent Authorities? Regulatory – how to gather information on off-label use for your disease The role of patient organisations in the implementation of the EU Directive on cross-border health care at national level How can patients participate in the evaluation of Centres of Expertise Registries, bio banks, reasearch EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
TUTORIAL TOPICS
1. Orphan Drug Development 2. Orphan Drug Designation and Marketing Autorisation 3. HTA for Rare Diseases 4. Registries 5. Quality assurance for gene testing
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
5. Conference Themes
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
THEMES
Theme 1: National Plans for Rare Diseases (transversal) Theme 2: Centres of Expertise and European Reference Networks for Rare Diseases Theme 3: Information & Public Health Theme 4: Research from Bench to Bedside Theme 5: Orphan Products & Rare Disease Therapies: Access Theme 6: Orphan Products & Rare Disease Therapies: Regulatory Theme 7: Patients' Empowerment 16
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EURORDIS GALA DINNER PATIENTS’ EURORDIS EMPOWERMENT GALA DINNER THEME CONCEPT TOPICS Solidarity & Hope for Rare Disease Patients Throughout Europe
• Empowering Patients and their Families: definition of the concept of Patients’ Empowerment • Patient’s generated knowledge • Patients’ Empowerment Programmes • Forum on Patients’ Groups Innovations (poster abstract oral presentations) • Non-medical based services
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
6. Role of National Alliances and European Federations
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EURORDIS GALA DINNER ROLEEURORDIS OF NATIONAL ALLIANCES & EUROPEAN GALA DINNER CONCEPT Solidarity & Hope for FEDERATIONS Rare Disease Patients Throughout Europe • Promotion of ECRD 2012 Brussels to your members • Promotion of ECRD 2012 Brussels to the health care professionals/academic partners and Centres of Expertise in your countries and national authorities. (flyers targeted to different stakeholders available via EURORDIS) • Dissemination of Call for Poster Abstracts for poster board & oral presentations (encourage submissions) • Promotion of EURORDIS-ECRD 2012 Patient Advocate Fellowship Programme • Attend ECRD 2012 (registration fees on next slide)
www.rare-diseases.eu 19
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EURORDIS GALA DINNER EURORDIS GALA DINNER CONCEPT REGISTRATION FEES Solidarity & Hope for Rare Disease Patients Throughout Europe
Category
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Early-bird
Full fee
EURORDIS members
100 €
150 €
Patients’ Organisations (non-EURORDIS members)
150 €
200 €
Academics / HCP / regulators
285 €
400 €
Pharma industry / consultants
1100 €
1300 €
Tutorials (industry)
350 €
400 €
Tutorials (academics)
100 €
150 €
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
Thank you for your attention
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EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EURORDIS-ECRD 2012 PATIENT ADVOCATES EURORDIS GALA DINNER EURORDIS GALA DINNER CONCEPT Solidarity & FELLOWSHIP Hope for Rare Disease Patients Throughout Europe PROGRAMME
• Programme targeted to patient advocates • Eligible Central and Eastern European countries: Albania, Armenia, Belarus, Bosnia, Bulgaria, Croatia, Czech Republic, Estonia, Georgia, Hungary, Latvia, Lithauania, FYROM, Romania, Russia, Serbia, Slovakia, Slovenia, Turkey and Ukraine • Fellowships include registration fee waivers, travel (economy fare) and 3 nights accommodation on-site 22
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
EURORDIS-ECRD 2012 PATIENT ADVOCATES EURORDIS GALA DINNER EURORDIS GALA DINNER CONCEPT Solidarity & FELLOWSHIP Hope for Rare Disease Patients Throughout Europe PROGRAMME
• In exchange, patient fellows must attend the Patient Groups Networking Reception on Wednesday, 23 May and send a report after the Conference to share their testimonies and analysis of their country’s situation with respect to access to information, treatment, care and other services • We would like to offer up to 40 patient fellowships at ECRD 2012 Brussels • Fellows will be selected by an ad hoc committee and notified by 29 February 2012 • Deadline for applications: 15 February 2012 23
EUROPEAN CONFERENCE ON RARE DISEASES & ORPHAN PRODUCTS
