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Rare 2030 conference

February 23 @ 12:30 pm - 5:30 pm

Cambridge Rare Disease Network - Rare 2030 conference 1
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Rare 2030

Feb 23 – Final Policy Conference

The future of rare diseases starts today – Recommendations from the Rare 2030 Foresight Study

This event will be the culmination of our two-year study and we will present our recommendations on February 23rd

The Rare 2030 Final Event marks the end of this two-year foresight study and will be the occasion to present the Rare 2030 policy recommendations for a new policy framework in presence of high-level speakers, such as Member of Parliament Frédérique Ries, or European Commissioner for Health and Food Safety Stella Kyriakides to name just a few.

Following the presentation and a panel discussion on the project’s outcomes, theme-specific (Access to healthcare, data, diagnostics, …) breakout sessions will be the opportunity for the audience to learn more about the Rare 2030 recommendations in detail and to learn how to use these in their advocacy, research and development, healthcare and policy work.

Register here


Rare2030 Final Conference (online) 23rd February 2021 13.30-18.30 CET
This event marks the end of the Rare2030 foresight project with the presentation of the final recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe.

“The Future of Rare Diseases Starts Today: Recommendations from the Rare 2030 Foresight Study”

Welcome: Frédérique Ries & Cristian Bușoi (Members of the European Parliament)
Opening: Stella Kyriakides (European Commissioner for Health) “Getting to know the Rare2030 project” (video)

Opening remarks: Olivier Véran (Ministry for Solidarity and Health, France); Terkel Andersen (President, EURORDIS – Rare Diseases Europe)

Keynote speakers: Maroš Šefčovič (Vice-President, European Commission – TBC); Pierre Delsaux (European Commission, DG Healthand Consumers); Nikolaos Milionis (European Court of Auditors); Rebecca Skarberg (ePAG advocate)

Presentation of the final recommendations
Discussion panel: Yann Le Cam (EURORDIS – Rare Diseases Europe); Victoria Hedley (NewcastleUniversity);Prof. Maurizio Scarpa (MetabERN); Lucia Monaco (Telethon Italia); Ana Rath (Orphanet); ISINNOVA; Fanni-Laura Mäntylä (Rare2030 Young Citizens)
Moderator: Prof. Kate Bushby (Newcastle University, Rare 2030 Research Advisory Board) Video by Young Citizens (“In ten years’ time…”)

Comfort break

Parallel breakout sessions – (Diagnosis, Research, Data, Integrated and Person- centred care, Access to OMPs, Access to Healthcare, Patient Partnership)
 Deep-dive and discussion on the final policy recommendations per topic
 Information about how to use Rare 2030 recommendations in practice
 Case studies from stakeholder perspectives
Comfort break

Closingremarks:KateřinaKonečná(Member of the EuropeanParliament);Milan Macek(Rare2030 Research Advisory Board); Jan Blatný(Ministry of Health, Czech Republic); YannLeCam(EURORDIS- RareDiseases Europe)
18.30 – 19:30
Networking Session

Rare2030 Breakout sessions (online) Agenda
23rd February 2021 16:00-17:30 CET
The breakout sessions (16:00-17:30 CET) will help the audience to (1) gain a deeper understanding of the recommendations, (2) provide concrete examples of how the recommendations can be used (case study),

(3) allow participants to discuss/brainstorm in small groups, give feedback, take ownership of the content and be inspired to take action in helping the community get to where we want to be by 2030.

7 parallel breakouts will be proposed and split by the recommendation topics and presented by:
 Moderator (topic expert): introduce the recommendations by topic
 Policy maker: present how these recommendations could be used from the policy maker
 Case study: provide comments on recommendations and how they will be used in theirwork
1. Research
Moderator (topic expert): Stefano Benvenuti (Fondazione Telethon)
Policy maker: Catherine Berens (European Commission, DG Research & Innovation) Case study: Ines Alves (Patient Expert in Rare diseases)
Virtual Host: Davor Duboka (EURORDIS)
2. Holistic Care
Moderator (topic expert): Clara Hervas (EURORDIS)
Policy maker: Inmaculada Placencia Porrero (DG Employment)
Case study: Dorica Dan (Romanian National Alliance for Rare Diseases) Virtual Host: Alex Cuenca (EURORDIS) TBC
3. Access to Healthcare
Moderator (topic expert): Victoria Hedley (UNEW)
Policy maker: Dr Enrique Terol (European Commission, DG Health and Food Safety) Case study: Ilaria Galetti (ePAG ERN ReCONNET)
Virtual Host: Lenja Wiehe (EURORDIS)

4. Treatment, development andaccess
Moderator (topic expert): Simone Boselli (EURORDIS)
Policy maker: Kaja Kantorska (European Commission, DG Health and Food Safety) Case study: Diego Ardigo (Chiesi) TBC
Virtual Host: Maria Cavaller (EURORDIS)
5. Diagnostics
Moderator (topic expert): Dr Luca Sangiorgi (ERN BOND, Istituto Ortopedico Rizzoli) Policy maker: Dr Holm Graessner (Coordinator ERN-RND)
Case study: Dr Christine Mundlos (ACHSE)
Virtual Host: Gulcin Gumus (EURORDIS)
6. Patient Partnership
Moderator (topic expert): Virginie Bros-Facer (EURORDIS) Policy maker: Antoni Montserrat Moliner (ALAN)
Case study: TBC
Virtual Host: Raquel Castro (EURORDIS)
7. Data
Moderator (topic expert): Ana Rath (Orphanet)
Policy maker: Ceri Thompson (European Commission, DG Communications Networks, Content and Technology)
Case study: Anne Charlet (Lupus Europe) Virtual Host: Veronica Popa (EURORDIS)


February 23
12:30 pm - 5:30 pm
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Rare 2030