role:
Executive Assistant to the CEO
telephone:
(+33) 1 56 53 52 11
email:
clara.francillon@eurordis.org
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Clara Francillon
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Jean-Louis Roux
role:
Public Affairs Director
telephone:
+32 (0)2 535 75 23
email:
jean-louis.roux@eurordis.org
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Jenny Steele
role:
European Public Affairs Junior Manager
telephone:
+32 (0)2 535 75 25
email:
jenny.steele@eurordis.org
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Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies
Value Determination, Appraisal, Pricing & Reimbursement
An exceptional two-day event not to be missed! 24 - 25 February 2016, Brussels. Please note that registration is required for this event.
EURORDIS and partners will bring together industry, patient leaders, academics, regulators and payers to discuss the current state of play and how to shape a more effective way to address value determination, appraisal, pricing and reimbursement of orphan medicines. In line with the EURORDIS Round Table of Companies, this symposium aims to improve patients' access to rare disease therapies throughout Europe.
Download the preliminary programme (PDF, 515 KB)
Symposium Objectives
This meeting on the topic of HTA is envisaged as a two-stage process, with a second symposium in 2017 on a more consensual approach to the new solutions discussed throughout 2016. For this 1st meeting, the overarching aim is to gain common understanding and agreement on the determinants of value, and of the assessment and appraisal methods for orphan medicinal products, by:
- Bringing all participants to a common understanding of issues/challenges of access to rare disease therapies (webinar/pre-reads to be circulated before meeting);
- Sharing existing and new processes to recognise which ones work best;
- In view of the 2017 symposium, agreeing on a structured approach forward and a set of solutions to explore.
Venue
Boulevard Adolphe Max 118 - 126, Brussels, Belgium
Tel. + 32 2 278 01 00
Metro Station: Rogier
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Virginie Bros-Facer
role:
Research Infrastructure Project Manager
telephone:
+33 1 56 53 52 13
email:
virginie.bros-facer@eurordis.org
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Laura Amorini
role:
Web Technology Manager
email:
laura.amorini@eurordis.org
Laura Amorini joined EURORDIS in 2015 as Web Technology Manager.
Part of the RareConnect team based in Barcelona, she is responsible for the development, maintenance and enhancement of rareconnect.org from a technology and UX perspective.
Previously, Laura worked for PayPal in London from 2008 until 2014 in various roles, such as UK project manager, before moving to Spain and working as UX and Product Owner at Alertaphone.
Laura holds a Master’s Degree in Business Management from the European School of Management and is also a certified scrum manager.
Laura speaks Italians, English and Spanish as well as some French and German.
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Tihana Kreso
role:
RareConnect Outreach Manager
telephone:
+385 1 2441 393
email:
tihana.kreso@eurordis.org
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Igor Ban
role:
RareConnect Web Content Manager
telephone:
+381 6 66 67 27 03
email:
igor.ban@eurordis.org
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Sandra Pavlovic
role:
RareConnect manager
telephone:
+381 6 66 67 27 03
email:
sandra.pavlovic@eurordis.org
Sandra Pavlovic joined EURORDIS in 2015 as RareConnect manager.
Sandra is part of the RareConnect team based in Belgrade and is responsible for developing and and maintaining RareConnect online communities within the Balkan region and East Europe.
Sandra has a long term experience as a patient advocate. She has worked as a volunteer with the National organisation for rare diseases of Serbia since 2013 acting as Vice President, and with DEBRA Serbia association since 2010, acting as President. Among other responsibilities and fundraising related activities, she has organised many events such as conferences, panel discussions, round tables, awareness days, represented organisations on television and local media, participated in working groups related to the amendment of various laws and regulations in the health and social care system in Serbia. Sandra has been working on several projects for improving quality of life of people affected by rare diseases in Serbia and Balkan region.
Sandra has two children, the youngest of whom has Epidermolysis bullosa.
She is a native Serbian speaker and also speaks English and Russian.
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Rare Cancers and Rare Diseases: Similarities and Differences
date_published:
November 2015
Mapping out the similarities and differences between rare cancers and rare diseases 2015-2016
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Clara Francillon
role:
Executive Assistant to the CEO
telephone:
+33 1 56 53 52 11
email:
clara.francillon@eurordis.org
↧
Jean-Louis Roux
↧
Jenny Steele
role:
Public Affairs Junior Manager
telephone:
+32 2 535 75 25
email:
jenny.steele@eurordis.org
↧
↧
Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies
date_published:
February 2016
An exceptional two-day event not to be missed!
24 - 25 February 2016
Brussels, Belgium
No new on-site registrations will be accepted
EURORDIS and partners will bring together industry, patient leaders, academics, regulators and payers to discuss the current state of play and how to shape a more effective way to address value determination, appraisal, pricing and reimbursement of orphan medicines. In line with the EURORDIS Round Table of Companies, this symposium aims to improve patients' access to rare disease therapies throughout Europe.
Download final programme (PDF, 475 KB)
Download final concept paper (PDF 404 KB)
Download the flyer (PDF, 842 KB)
5. Programme Committee Members & Advisors
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Annette Dumas
role:
Social Policy Senior Advisor
telephone:
+33 1 56 53 52 10
email:
annette.dumas@eurordis.org
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Marie Meunier
role:
Executive Assistant to the Chief Executive Officer
telephone:
+33 1 56 53 52 11
email:
marie.meunier@eurordis.org
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