Rare Disease Symposium: the Rare Disease Patient in 2030

Interested in the full program? Scroll down. 

Rare Disease Symposium: the Rare Disease Patient in 2030

Interested in the full program? Scroll down. 

 

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Program

Plenary session Break-out session 1 Break-out session 2
09:15 - 09:30
Registration & Coffee/tea
09:30 - 09:45
09:45 - 10:00
10:00 - 10:15
Welcome
Setting the ground rules of the symposium.

Not further analyzing the problem, but finding solutions; No ‘yes, but’; No blaming and shaming; Let’s hear what we can do, instead of what someone else should do.
Annemiek Verkamman, HollandBIO
10:15 - 10:30
Keynote Speech
A visionary overview of the ideal Rare Disease landscape in 2030.
Elin Haf Davies, Child Health Advocate and Founder of Aparito Health.
10:30 - 10:45
10:45 - 11:00
Setting the scene
An overview of the current environment and stakeholders involved
Remco de Vrueh, Lygature
11:00 - 11:15
1.1 Better & faster drug development: How to cope with benefit- risk
A discussion on the risk patients are willing to take for uncertain benefit. What do clinical trials look like in 2030?
Ronald Brus, MyTomorrows
Violeta Stoyanova, CBG-MEB

Moderator: Roger Legtenberg, PSR Orphan Experts
2.1 Access to treatments: a sustainable healthcare system
How to prevent that treatments are out of reach for patients due to discussion on orphan drug prices and other limited aspects?
Martin vd Graaff, ZiN
Joep de Groot, CbusineZ

Moderator: Jacquelien Noordhoek,NCFS
11:15 - 11:30
11:30 - 11:45
11:45 - 12:00
12:00 - 12:15
12:15 - 12:30
12:30 - 12:45
Lunch & networking
Including rare disease patient organizations exhibition.
12:45 - 13:00
13:00 - 13:15
13:15 - 13:30
13:30 - 13:45
1.2. Better & faster drug development: Patients in the driver seat
Better and faster drug development by better collaborations with patients.
Ana Mingorance, Dracaena Consulting
Hanka Dekker, Patient Association VKS

Moderator: Philipp von Galwitz, Admedicum
2.2 Access to treatments: How to improve the actual use of effective treatments
Discussion on innovative models to deliver effective treatments to the right patients.
Rob Vries, Hub4Organoids
Pete Chan, Raremark

Moderator: Sytse Buruma, Biogen
13:45 - 14:00
14:00 - 14:15
14:15 - 14:30
14:30 - 14:45
14:45 - 15:00
15:00 - 15:15
Coffee/tea break
Including rare disease patient organizations exhibition.
15:15 - 15:30
15:30 - 15:45
Summary of break-out sessions & discussion
From ideas in the sessions to concrete solutions. Interactive session that rounds up the symposium, outlining the real challenges as a starting point for creating solutions, and energizes for the drinks & networking.
Gijs Weenink, DebatAcademie
15:45 - 16:00
16:00 - 16:15
16:15 - 16:30
Drinks & networking
Including rare disease patient organizations exhibition.
16:30 - 16:45
16:45 - 17:00
17:00 - 17:15
17:15 - 17:30
17:30 - 17:45

Plenary session

  • Registration & Coffee/tea
    09:15 - 10:00
  • Welcome
    10:00 - 10:15
  • Keynote Speech
    10:15 - 10:45
  • Setting the scene
    10:45 - 11:00
  • Lunch & networking
    12:30 - 13:30
  • Coffee/tea break
    15:00 - 15:30
  • Summary of break-out sessions & discussion
    15:30 - 16:15
  • Drinks & networking
    16:15 - 17:45

Break-out session 1

  • 1.1 Better & faster drug development: How to cope with benefit- risk
    11:00 - 12:30
  • 1.2. Better & faster drug development: Patients in the driver seat
    13:30 - 15:00

Break-out session 2

  • 2.1 Access to treatments: a sustainable healthcare system
    11:00 - 12:30
  • 2.2 Access to treatments: How to improve the actual use of effective treatments
    13:30 - 15:00
Plenary session Break-out session 1 Break-out session 2
09:15 - 09:30
Registration & Coffee/tea
09:30 - 09:45
09:45 - 10:00

Plenary session

  • Registration & Coffee/tea
    09:15 - 10:00
Plenary session Break-out session 1 Break-out session 2
10:00 - 10:15
Welcome
Setting the ground rules of the symposium.

Not further analyzing the problem, but finding solutions; No ‘yes, but’; No blaming and shaming; Let’s hear what we can do, instead of what someone else should do.
Annemiek Verkamman, HollandBIO

Plenary session

  • Welcome
    10:00 - 10:15
Plenary session Break-out session 1 Break-out session 2
10:15 - 10:30
Keynote Speech
A visionary overview of the ideal Rare Disease landscape in 2030.
Elin Haf Davies, Child Health Advocate and Founder of Aparito Health.
10:30 - 10:45

Plenary session

  • Keynote Speech
    10:15 - 10:45
Plenary session Break-out session 1 Break-out session 2
10:45 - 11:00
Setting the scene
An overview of the current environment and stakeholders involved
Remco de Vrueh, Lygature

Plenary session

  • Setting the scene
    10:45 - 11:00
Plenary session Break-out session 1 Break-out session 2
11:00 - 11:15
1.1 Better & faster drug development: How to cope with benefit- risk
A discussion on the risk patients are willing to take for uncertain benefit. What do clinical trials look like in 2030?
Ronald Brus, MyTomorrows
Violeta Stoyanova, CBG-MEB

Moderator: Roger Legtenberg, PSR Orphan Experts
11:15 - 11:30
11:30 - 11:45
11:45 - 12:00
12:00 - 12:15
12:15 - 12:30

Break-out session 1

  • 1.1 Better & faster drug development: How to cope with benefit- risk
    11:00 - 12:30
Plenary session Break-out session 1 Break-out session 2
11:00 - 11:15
2.1 Access to treatments: a sustainable healthcare system
How to prevent that treatments are out of reach for patients due to discussion on orphan drug prices and other limited aspects?
Martin vd Graaff, ZiN
Joep de Groot, CbusineZ

Moderator: Jacquelien Noordhoek,NCFS
11:15 - 11:30
11:30 - 11:45
11:45 - 12:00
12:00 - 12:15
12:15 - 12:30

Break-out session 2

  • 2.1 Access to treatments: a sustainable healthcare system
    11:00 - 12:30
Plenary session Break-out session 1 Break-out session 2
12:30 - 12:45
Lunch & networking
Including rare disease patient organizations exhibition.
12:45 - 13:00
13:00 - 13:15
13:15 - 13:30

Plenary session

  • Lunch & networking
    12:30 - 13:30
Plenary session Break-out session 1 Break-out session 2
13:30 - 13:45
1.2. Better & faster drug development: Patients in the driver seat
Better and faster drug development by better collaborations with patients.
Ana Mingorance, Dracaena Consulting
Hanka Dekker, Patient Association VKS

Moderator: Philipp von Galwitz, Admedicum
13:45 - 14:00
14:00 - 14:15
14:15 - 14:30
14:30 - 14:45
14:45 - 15:00

Break-out session 1

  • 1.2. Better & faster drug development: Patients in the driver seat
    13:30 - 15:00
Plenary session Break-out session 1 Break-out session 2
13:30 - 13:45
2.2 Access to treatments: How to improve the actual use of effective treatments
Discussion on innovative models to deliver effective treatments to the right patients.
Rob Vries, Hub4Organoids
Pete Chan, Raremark

Moderator: Sytse Buruma, Biogen
13:45 - 14:00
14:00 - 14:15
14:15 - 14:30
14:30 - 14:45
14:45 - 15:00

Break-out session 2

  • 2.2 Access to treatments: How to improve the actual use of effective treatments
    13:30 - 15:00
Plenary session Break-out session 1 Break-out session 2
15:30 - 15:45
Summary of break-out sessions & discussion
From ideas in the sessions to concrete solutions. Interactive session that rounds up the symposium, outlining the real challenges as a starting point for creating solutions, and energizes for the drinks & networking.
Gijs Weenink, DebatAcademie
15:45 - 16:00
16:00 - 16:15

Plenary session

  • Summary of break-out sessions & discussion
    15:30 - 16:15
Plenary session Break-out session 1 Break-out session 2
16:15 - 16:30
Drinks & networking
Including rare disease patient organizations exhibition.
16:30 - 16:45
16:45 - 17:00
17:00 - 17:15
17:15 - 17:30
17:30 - 17:45

Plenary session

  • Drinks & networking
    16:15 - 17:45
Plenary session Break-out session 1 Break-out session 2
15:00 - 15:15
Coffee/tea break
Including rare disease patient organizations exhibition.
15:15 - 15:30

Plenary session

  • Coffee/tea break
    15:00 - 15:30
No events available!

Please click here for the slides of all the presentations.

Symposium house rules

During the Symposium, a number of strict house rules were applied. We have not analysed the problem, we have not assigned the blame and we certainly have not discussed why proposed solutions won’t work. Rather than to hear what others should do, we wanted to know what we can do. Because only by engaging in a joint and solution-oriented dialogue, we will be able to shape the environment for the rare disease patient in 2030.

Location

The Rare Disease Symposium was held at:

‘Het Rijk van de Keizer’
Joris van den Berghweg 101-111
1067 HP Amsterdam, the Netherlands.

 

Rijk van de keizer