| Dokumendiregister | Sotsiaalkindlustusamet |
| Viit | 2-1/19427-1 |
| Registreeritud | 28.07.2025 |
| Sünkroonitud | 29.07.2025 |
| Liik | Kiri SISSE |
| Funktsioon | 2 Teabehaldus |
| Sari | 2-1 Kirjavahetus ja pöördumised üld- ja administratiivsetes küsimustes |
| Toimik | 2-1/2025 |
| Juurdepääsupiirang | Avalik |
| Juurdepääsupiirang | |
| Adressaat | ERDERA — European Rare Diseases Research Alliance |
| Saabumis/saatmisviis | ERDERA — European Rare Diseases Research Alliance |
| Vastutaja | Leila Lahtvee (SKA, Erivajadusega inimeste heaolu osakond) |
| Originaal | Ava uues aknas |
2 N D G E N E R A L A S S E M B L Y M E E T I N G
T O A M S T E R D A M
WELCOME
29, 30 & 31 October 2025
Meibergdreef 9,
1105 AZ Amsterdam, the Netherlands
Amsterdam Universitair Medische Center,
Amsterdam UMC is home to eight integrated research institutes. By joining forces, these research institutes organized their scientific
research more efficiently and became a more attractive partner for large-scale, international and multi-year study all over the world. This was an interesting development for students and researchers, both
within and outside the country.
Our venue for this 2nd General Assembly Meeting will be the Conference Room 4 of the Amsterdam UMC building.
The venue
Trains to Amsterdam Trains to Amsterdam: https://www.nsinternational.com/en
Flights to Amsterdam Airport: Amsterdam Schiphol Airport (AMS)
https://www.schiphol.nl/en/
Taxi Taxi: https://www.schiphol.nl/en/page/by-taxi-to-and-from-schiphol/
Also Bolt and Über are operating in Amsterdam
Public transport Public Transport (OV) is the best and most sustainable way to travel in
Amsterdam. Use https://9292.nl/en/journeyadvice to plan
How to get to Amsterdam?
From the airport
By metro Take Inter-city Rail from Schiphol Airport: Intercity - Arnhem
Centraal. Arrive at Amsterdam Bijlmer ArenA. Walk from Amsterdam Bijlmer ArenA to Amsterdam, Station Bijlmer ArenA.
Take Subway: 54 – Gein. Depart from Amsterdam, Station Bijlmer ArenA. Arrive at Amsterdam, Station Holendrecht Walk from
Amsterdam, Station Holendrecht to destination location.
From other locations Consult https://9292.nl/en/journeyadvice or Google Maps. You can easily travel with your contactless Maestro, V PAY, Mastercard or
Visa bankcard (check in and out!) see: https://www.ns.nl/en/customer-service/payment/ovpay.html or buy
via 9292 app or from machines/kiosks in the stations. By Bike: You can rent a bike from the hotel or look for a Shared
bicycles.
How to get to the venue?
Click on the hotel name to visit its website and on the address to view its location on maps.
Hotel: Leonardo Royal Hotel Amsterdam Address: Paul van Vlissingenstraat 24, 1096 BK Amsterdam
More info
16 km distance from the Amsterdam SchipholAirport.
Next to Metro/train stop Overamstel.
9,2 km or 17 min public transportationfrom the venue.
Fletcher Hotel Amsterdam – Fletcher Hotels Address: Schepenbergweg 50, 1105 AT Amsterdam
2,3 km or 14 min walking distance from the venue.
OZO Hotels Arena Amsterdam Address: Karspeldreef 2, 1101 CJ Amsterdam
2,9 km or 22 min walking distance from the venue.
Joy Hotel, Amsterdam Address: 385 Hullenbergweg, 1101 CS Amsterdam
3,1 km or 19 min walking distance from the venue.
Holiday Inn Amsterdam - Arena Towers Address: Hoogoorddreef 66A, Building A, 1101 BE
Amsterdam
3,4 km or 28 min walking distance from the Venue, 16
min public transportation
C O O R D I N A T I O N O F F I C E R E C O M M E N D S T H E F O L L O W I N G H O T E L S
Accommodation
Click on the hotel name to visit its website and on the address to view its location on maps.
Courtyard by Marriott Amsterdam Address: Hoogoorddreef 1, 1101 BA Amsterdam
3,6 km or 30 min walking distance from the Venue, 14
min public transportation
Hampton By Hilton Amsterdam/ Arena Boulevard Address: Hoekenrode 1, 1102 BR Amsterdam
4,4 km or 33 min walking distance from the Venue, 11
min public transportation
Easy Hotel Amsterdam Arena Boulevard Address: Johan Cruijff Boulevard 129, 1101 DM Amsterdam
3,0 km or 36 min walking distance from the Venue, 11
min public transportation
Bastion Hotel Amsterdam Amstel Address: Verlengde van Marwijk Kooystraat 30, 1114 AC
Ouder-Amstel
8,5 km , 24 min public transportation
Van der Valk Hotel Amsterdam Zuidas Address: Tommaso Albinonistraat 200, 1083 HM Amsterdam
9,6 km, 28 min public transportation
C O O R D I N A T I O N O F F I C E R E C O M M E N D S T H E F O L L O W I N G H O T E L S
Accommodation
Pre-Conference Dinner R E S T A U R A N T I N D E W A A G
Date: 29th October, 19:00 CEST Location: Nieuwmarkt 4, historical CentreAmsterdam
https://indewaag.nl/
From the venue to the restaurant is easy to travel with Metro as well (24 min).
Walk from starting location to Amsterdam, Station Holendrecht (6min), take Metro 54 direction
CentraalStation from Holendrecht and step out Nieuwmarkt.
From Amsterdam Central trainstation 7 min walking. From Airport several options, takes 30-40 minutes.
From other locations consult: https://9292.nl/en/journeyadvice
General Assembly Meeting Agenda
29-30-31 October 2025
Page 1 of 4
ERDERA GA n°101156595 project is funded under call HORIZON-HLTH-2023-DISEASE-07 as a COFUND Action
General Assembly Meeting
29-30-31 October 2025
Agenda
This event will be recorded. The public session recording will be available on ERDERA communication channels. The closed ERDERA consortium meeting
sessions recording will only be available to ERDERA consortium partners.
General Assembly Meeting Agenda
29-30-31 October 2025
Page 2 of 4
Programme at a glance October 29th 2025 Afternoon Governing Board (GB), Multistakeholder Advisory Board (MAB) and Workstream Leaders ONLY Venue: Amsterdam UMC (Meibergdreef 9, 1105 AZ Amsterdam)
Time (CET) Title Speakers
13:00 - 14:00 Registration & light lunch: Open to all registered participants
GB & MAB & OG: strategic discussions for ERDERA
14:00 - 16:15 To be confirmed To be confirmed
16:15 - 16:45 Coffee and network break
16:45 - 18:00 To be confirmed To be confirmed
October 29th 2025 Evening Venue: Restaurant IN DE WAAG (Nieuwmarkt 4, historical Centre Amsterdam)
Time (CET) Title Speakers
Closed ERDERA Consortium meeting
19:00 - 22:30 Networking Dinner: Informal Networking and Discussions
General Assembly Meeting Agenda
29-30-31 October 2025
Page 3 of 4
October 30th 2025 Venue: Amsterdam UMC (Meibergdreef 9, 1105 AZ Amsterdam)
Time (CET) Title Speakers
Official Opening (open session)
08:30 - 09:00 Registration
09:00 - 09:10 Welcome
Yvo Roos, Amsterdam, UMC Board Member. Daria Julkowska, ERDERA Coordinator, INSERM.
09:10 - 10:00 Keynote speech
Fanny Mochel (Remote), Director of the Reference Center for Neurometabolic Diseases - La Pitié-Salpêtrière Hospital, APHP-Sorbonne University, Paris
10:00 - 10:50 Keynote Speech Bojana Mirosavljevic, Founder of Zivot-Life Association.
10:50 - 11:20 ERDERA Achievements ERDERA Coordination Office
11:20 - 11:45 Coffee and network break
PLENARY SESSION
11:45 - 13:00 GB & MAB Feedback To be confirmed
13:00 - 13:45 Lunch Break
13:45 - 14:30 Monitoring To be confirmed
14:30 - 15:30 Patient and Public Involvement and Engagement (PPIE) To be confirmed
15:30 - 16:00 Data Service Hub Workflow and Assets To be confirmed
16:00 - 16:30 Coffee and network break
BREAKOUT SESSION
16:30 - 18:00
“Data workflows, data service access, and support mechanisms”
Data Service Hub and Rare Disease Funding
" Expertise Service Hub and Clinical Research Network: Strengthening Support and Synergies"
Expertise Service Hub and Clinical Research Network
General Assembly Meeting Agenda
29-30-31 October 2025
Page 4 of 4
October 31st 2025 Venue: Amsterdam UMC (Meibergdreef 9, 1105 AZ Amsterdam)
PLENARY SESSION Time (CEST) Title Speakers
08:30 - 09:00 Registration 09:00 - 10:30 Training To be confirmed
10:30 - 11:00 Towards long-term sustainability: Co-creating ERDERA post-grant
To be confirmed
11:00 - 11:30 Coffee Break 11:30 - 12:00 Ethics activities and updates To be confirmed
BREAKOUT SESSION
12:00 - 13:30
Long term Joint Transnational Call strategy alignment: timelines and outputs from Clinical Research Network and ATMP Workpackages on best use of results for future calls.
WP3 – Clinical Research Network – WP21 – WP18
“WP14 & WP15 (Data Service Hub) connection with WP19 (Expertise Service Hub) methodological work”
WP14 & WP15 - WP19
13:30 - 14:15 Lunch
14:15 - 15:45
“Uses cases (meta) data pipelines)” WP14 & WP15 - WP9 & WP10.
“Rare Diseases Funding and Expertise Service Hub: Lessons learnt from Joint Transnational Calls 2025 and preparation of future calls “
Rare Diseases Funding – Expertise Service Hub
15:45 - 16:15 Coffee Break PLENARY SESSION
16:15 - 16:45 Thematic Session Restitution To be confirmed
16:45 - 17:15 Coordination and Communication Updates
ERDERA Coordination Office
17:15 - 17:30 Closing remarks To be confirmed
From: Coordination Team <[email protected]>
Sent: Fri, 25 Jul 2025 15:11:29 +0000
To: Coordination Team <[email protected]>
Subject: Invitation to the ERDERA General Assembly Meeting from 29–31 October 2025 in Amsterdam
|
Tähelepanu! Tegemist on väljastpoolt asutust saabunud kirjaga. Tundmatu saatja korral palume linke ja faile mitte avada. |
Dear ERDERA Consortium,
We are pleased to invite you to the upcoming ERDERA 2nd General Assembly Meeting, which will take place from
Wednesday 29th to Friday 31st October 2025 in
Amsterdam.
To kick off the General Assembly, we will begin with a networking dinner on the evening of the 29th (19:00 CET).
➡️ To confirm your participation and assist with logistics, please complete the registration form here.
2 N D G E N E R A L A S S E M B L Y M E E T I N G
T O A M S T E R D A M
WELCOME
29, 30 & 31 October 2025
Meibergdreef 9,
1105 AZ Amsterdam, the Netherlands
Amsterdam Universitair Medische Center,
Amsterdam UMC is home to eight integrated research institutes. By joining forces, these research institutes organized their scientific
research more efficiently and became a more attractive partner for large-scale, international and multi-year study all over the world. This was an interesting development for students and researchers, both
within and outside the country.
Our venue for this 2nd General Assembly Meeting will be the Conference Room 4 of the Amsterdam UMC building.
The venue
Trains to Amsterdam Trains to Amsterdam: https://www.nsinternational.com/en
Flights to Amsterdam Airport: Amsterdam Schiphol Airport (AMS)
https://www.schiphol.nl/en/
Taxi Taxi: https://www.schiphol.nl/en/page/by-taxi-to-and-from-schiphol/
Also Bolt and Über are operating in Amsterdam
Public transport Public Transport (OV) is the best and most sustainable way to travel in
Amsterdam. Use https://9292.nl/en/journeyadvice to plan
How to get to Amsterdam?
From the airport
By metro Take Inter-city Rail from Schiphol Airport: Intercity - Arnhem
Centraal. Arrive at Amsterdam Bijlmer ArenA. Walk from Amsterdam Bijlmer ArenA to Amsterdam, Station Bijlmer ArenA.
Take Subway: 54 – Gein. Depart from Amsterdam, Station Bijlmer ArenA. Arrive at Amsterdam, Station Holendrecht Walk from
Amsterdam, Station Holendrecht to destination location.
From other locations Consult https://9292.nl/en/journeyadvice or Google Maps. You can easily travel with your contactless Maestro, V PAY, Mastercard or
Visa bankcard (check in and out!) see: https://www.ns.nl/en/customer-service/payment/ovpay.html or buy
via 9292 app or from machines/kiosks in the stations. By Bike: You can rent a bike from the hotel or look for a Shared
bicycles.
How to get to the venue?
Click on the hotel name to visit its website and on the address to view its location on maps.
Hotel: Leonardo Royal Hotel Amsterdam Address: Paul van Vlissingenstraat 24, 1096 BK Amsterdam
More info
16 km distance from the Amsterdam SchipholAirport.
Next to Metro/train stop Overamstel.
9,2 km or 17 min public transportationfrom the venue.
Fletcher Hotel Amsterdam – Fletcher Hotels Address: Schepenbergweg 50, 1105 AT Amsterdam
2,3 km or 14 min walking distance from the venue.
OZO Hotels Arena Amsterdam Address: Karspeldreef 2, 1101 CJ Amsterdam
2,9 km or 22 min walking distance from the venue.
Joy Hotel, Amsterdam Address: 385 Hullenbergweg, 1101 CS Amsterdam
3,1 km or 19 min walking distance from the venue.
Holiday Inn Amsterdam - Arena Towers Address: Hoogoorddreef 66A, Building A, 1101 BE
Amsterdam
3,4 km or 28 min walking distance from the Venue, 16
min public transportation
C O O R D I N A T I O N O F F I C E R E C O M M E N D S T H E F O L L O W I N G H O T E L S
Accommodation
Click on the hotel name to visit its website and on the address to view its location on maps.
Courtyard by Marriott Amsterdam Address: Hoogoorddreef 1, 1101 BA Amsterdam
3,6 km or 30 min walking distance from the Venue, 14
min public transportation
Hampton By Hilton Amsterdam/ Arena Boulevard Address: Hoekenrode 1, 1102 BR Amsterdam
4,4 km or 33 min walking distance from the Venue, 11
min public transportation
Easy Hotel Amsterdam Arena Boulevard Address: Johan Cruijff Boulevard 129, 1101 DM Amsterdam
3,0 km or 36 min walking distance from the Venue, 11
min public transportation
Bastion Hotel Amsterdam Amstel Address: Verlengde van Marwijk Kooystraat 30, 1114 AC
Ouder-Amstel
8,5 km , 24 min public transportation
Van der Valk Hotel Amsterdam Zuidas Address: Tommaso Albinonistraat 200, 1083 HM Amsterdam
9,6 km, 28 min public transportation
C O O R D I N A T I O N O F F I C E R E C O M M E N D S T H E F O L L O W I N G H O T E L S
Accommodation
Pre-Conference Dinner R E S T A U R A N T I N D E W A A G
Date: 29th October, 19:00 CEST Location: Nieuwmarkt 4, historical CentreAmsterdam
https://indewaag.nl/
From the venue to the restaurant is easy to travel with Metro as well (24 min).
Walk from starting location to Amsterdam, Station Holendrecht (6min), take Metro 54 direction
CentraalStation from Holendrecht and step out Nieuwmarkt.
From Amsterdam Central trainstation 7 min walking. From Airport several options, takes 30-40 minutes.
From other locations consult: https://9292.nl/en/journeyadvice
General Assembly Meeting Agenda
29-30-31 October 2025
Page 1 of 4
ERDERA GA n°101156595 project is funded under call HORIZON-HLTH-2023-DISEASE-07 as a COFUND Action
General Assembly Meeting
29-30-31 October 2025
Agenda
This event will be recorded. The public session recording will be available on ERDERA communication channels. The closed ERDERA consortium meeting
sessions recording will only be available to ERDERA consortium partners.
General Assembly Meeting Agenda
29-30-31 October 2025
Page 2 of 4
Programme at a glance October 29th 2025 Afternoon Governing Board (GB), Multistakeholder Advisory Board (MAB) and Workstream Leaders ONLY Venue: Amsterdam UMC (Meibergdreef 9, 1105 AZ Amsterdam)
Time (CET) Title Speakers
13:00 - 14:00 Registration & light lunch: Open to all registered participants
GB & MAB & OG: strategic discussions for ERDERA
14:00 - 16:15 To be confirmed To be confirmed
16:15 - 16:45 Coffee and network break
16:45 - 18:00 To be confirmed To be confirmed
October 29th 2025 Evening Venue: Restaurant IN DE WAAG (Nieuwmarkt 4, historical Centre Amsterdam)
Time (CET) Title Speakers
Closed ERDERA Consortium meeting
19:00 - 22:30 Networking Dinner: Informal Networking and Discussions
General Assembly Meeting Agenda
29-30-31 October 2025
Page 3 of 4
October 30th 2025 Venue: Amsterdam UMC (Meibergdreef 9, 1105 AZ Amsterdam)
Time (CET) Title Speakers
Official Opening (open session)
08:30 - 09:00 Registration
09:00 - 09:10 Welcome
Yvo Roos, Amsterdam, UMC Board Member. Daria Julkowska, ERDERA Coordinator, INSERM.
09:10 - 10:00 Keynote speech
Fanny Mochel (Remote), Director of the Reference Center for Neurometabolic Diseases - La Pitié-Salpêtrière Hospital, APHP-Sorbonne University, Paris
10:00 - 10:50 Keynote Speech Bojana Mirosavljevic, Founder of Zivot-Life Association.
10:50 - 11:20 ERDERA Achievements ERDERA Coordination Office
11:20 - 11:45 Coffee and network break
PLENARY SESSION
11:45 - 13:00 GB & MAB Feedback To be confirmed
13:00 - 13:45 Lunch Break
13:45 - 14:30 Monitoring To be confirmed
14:30 - 15:30 Patient and Public Involvement and Engagement (PPIE) To be confirmed
15:30 - 16:00 Data Service Hub Workflow and Assets To be confirmed
16:00 - 16:30 Coffee and network break
BREAKOUT SESSION
16:30 - 18:00
“Data workflows, data service access, and support mechanisms”
Data Service Hub and Rare Disease Funding
" Expertise Service Hub and Clinical Research Network: Strengthening Support and Synergies"
Expertise Service Hub and Clinical Research Network
General Assembly Meeting Agenda
29-30-31 October 2025
Page 4 of 4
October 31st 2025 Venue: Amsterdam UMC (Meibergdreef 9, 1105 AZ Amsterdam)
PLENARY SESSION Time (CEST) Title Speakers
08:30 - 09:00 Registration 09:00 - 10:30 Training To be confirmed
10:30 - 11:00 Towards long-term sustainability: Co-creating ERDERA post-grant
To be confirmed
11:00 - 11:30 Coffee Break 11:30 - 12:00 Ethics activities and updates To be confirmed
BREAKOUT SESSION
12:00 - 13:30
Long term Joint Transnational Call strategy alignment: timelines and outputs from Clinical Research Network and ATMP Workpackages on best use of results for future calls.
WP3 – Clinical Research Network – WP21 – WP18
“WP14 & WP15 (Data Service Hub) connection with WP19 (Expertise Service Hub) methodological work”
WP14 & WP15 - WP19
13:30 - 14:15 Lunch
14:15 - 15:45
“Uses cases (meta) data pipelines)” WP14 & WP15 - WP9 & WP10.
“Rare Diseases Funding and Expertise Service Hub: Lessons learnt from Joint Transnational Calls 2025 and preparation of future calls “
Rare Diseases Funding – Expertise Service Hub
15:45 - 16:15 Coffee Break PLENARY SESSION
16:15 - 16:45 Thematic Session Restitution To be confirmed
16:45 - 17:15 Coordination and Communication Updates
ERDERA Coordination Office
17:15 - 17:30 Closing remarks To be confirmed