Alessandra FerrarioAlessandra Ferrario is a Research Officer and a PhD candidate at the London School of Economics. Her research focuses on access to medicines and non-communicable diseases. Alessandra’s PhD studies issues around access to new cancer medicines in Europe. One of her former research projects investigated the burden and management of diabetes, both from a health and economic perspective, as part of a multi-country study in low- and middle-income countries. As part of her work on access to medicines, Alessandra has worked with the World Health Organization on issues around availability, affordability and rational use of medicines in the Republic of Moldova and Estonia. She holds an MSc in Health Policy, Planning and Financing (LSE/LSHTM), MSc in Epidemiology (Swiss Tropical and Public Health Institute, University of Basel) and BSc in Molecular Biology (University of Basel).


Krusenberg Herrgård is a friendly conference center

and hotel at the lake Mälaren, a 25 min drive away from Stockholm Arlanda, Sweden's main airport. 

Melanoma Patient Network Europe

Sarah GarnerProfessor Sarah Garner PhD, BPharm is a pharmacist specialising in the interface between Health Technology Assessment (HTA) and regulation. Sarah is the Associate Director for Science Policy and Research at the UK's National Institute for Health and Care Excellence (NICE) and an honorary professor at UCL and Manchester University. At NICE her responsibilities include the planning and delivery of NICE’s science policy and research agenda relating to methodology and clinical research and the Citizens Council. She leads work packages of the GetReal ADAPTSMART and Big Data for Better Outcomes projects funded by the EU Innovative Medicines Initiative. The projects are developing policy proposals for the adaptive pathways and use of real-word data in pharmaceutical development, regulatory and HTA decision making. In 2010-11 Sarah is working with the NEWDIGS team at MIT to identify policy solutions using a systems approach focussed on adaptive pathways. Sarah is on the UK Expert Group on Innovation in Regulation of Healthcare and a fellow at the Centre for the Advancement of Sustainable Medical Innovation.

MPNEsupport Org 802492-1069, Sweden

We thank for their support

program KRUSENBERG 2016

MPNE WORKSHOP 24th- 29th November 

The small print

Decisions about workshop participation will be based on suitability for the workshop as well as scope of the Melanoma patient network Europe and are final.


​ Our ambition

 A resource tracking the      access to Melanoma drugs

 in Europe published by      Saturday night.

​ MPNE principles

 1. patients first               

 2. solutions, not problems

 3. data, not opinions        


 4. if you don't do it- no one  will.

Access to innovation

Annual MPNE workshop for European Melanoma advocates

version 20th November

Thursday, 24th November 2016
arrival and introduction


Meet your colleagues 

Elevator Introductions

present yourself with 1 slide (optional) in 2 min (not optional)!

18.00- 18.30

Introduction to the workshop

Bettina Ryll


Dinner at Krusenberg

Friday, 25th November

Workshop Day 1

Panos Kanavos, London School of Economics

In order to grant access to expensive new medicines, healthcare systems (payers) and the manufacturers of medicines can enter so-called Managed Entry agreements that share the risk between the payer and the manufacturer. 

Panos will introduce the different types of Managed Entry (also called Risk Sharing) Agreements currently used in Europe and we will discuss the benefits and challenges with the different schemes.

Alessandra Ferrario was so kind to substitute Panos Kanavos due to illness. Thank you, Alessandra!

Sarah Garner, UK
Health Technology Assessment (HTA) looks at the effects and impact, including on costs, of a new medicine. Most European countries by now have an HTA body in place or are currently establishing one; EUnetHTA is a European collaboration between the different HTA bodies.  WHO definition of HTA

Sarah will introduce the principles behind HTA, provide a short introduction to the current work for EUnetHTA and give an update on GetReal, the IMI project looking in the use of Real World Evidence in drug development (MPNE was also involved in this project). 

Learning objectives for Friday

- understand the motivation for Managed Entry Agreements

- understand the different types of Managed Entry Agreements in use, including advantages, disadvantages and limitations

- gain an overview over Managed Entry Agreements currently used in Europe

- the role of HTA in ensuring access to innovative medicines 

8.00- 9.00 Breakfast
9.00- 10.30 Session 1, Alessandra Ferrario, LSE 

- Presentation 1: Managed entry agreements (MEAs), 45 minutes
Content: What are MEAs,different types of MEAs, examples of MEAs implemented in Europe
- Workshop 1: Barriers and enablers in implementing managed entry agreements in your country, 45 minutes
10.30- 11.00 Coffee
11.00- 12.30 Session 2, Alessandra Ferrario, LSE

- Presentation 2: Beyond MEAs: Additional tools to improve access
Content: Special funds (e.g. Cancer Drugs Fund in England and similar funds in other countries), decision modifiers (e.g. end-of-life criteria NICE), and other tools to improve access
13.00- 14.00 Lunch
14.30- 15.30 Session 3 Alessandra Ferrario, LSE

Case Study
15.30- 16.00 Coffee
16.00- 17.30 Session 4 An introduction to HTA in Europe. Sarah Garner, NICE
17.30- 18.30 Session 5 Talk to the journalist- Anna Wagstaff and Simon Crompton

19.30 Dinner

Saturday, 26th November
Workshop Day 2- practical mapping work

Map the availability of the 8 in Europe approved Melanoma Drugs on to your healthcare system, identifying potential problems. Thanks to a collaboration with CIRS, the Centre for Innovation in Regulatory Science, each advocate will receive a map of the healthcare system of their country. Training on how to use these maps will be provided prior to the workshop. 

Advocates will work in groups to complete the data for their own country; in the evening, we will combine our datasets to generate a detailed map of access to Melanoma innovation in Europe.

Please note that that sessions for Ocular Melanoma advocates run in parallel.

8- 9am Breakfast
9.00- 10.30 Session 1 Introduction to the mapping exercise
10.30- 11.00 Coffee
11.00- 12.30 Session 2 Practical work- Mapping

parallel for OM: HTA for rare cancers. Sarah Garner, NICE
13.00- 14.00 Lunch
14.30- 15.30 Session 3 Advocacy session

  • Organising a patient conference. Imogen Cheese, UK.
  • The podcast experience. Fredrik Östman, Sweden.
  • Communication QuickStart- practical advice for advocates. Antonella Romanini, Italy.
  • ​What advocates can learn from start-ups. Andrew Evans, Netherlands.

15.30- 16.00 Coffee
16.00- 17.30 Session 4 Practical work- Mapping

parallel for OM: Medical Device Regulation in Europe
17.30- 18.00 Summary of the Day

19.00- 19.30 Reception
19.30- Julbord

Sunday, 29th November
Workshop Day 2- advocates only

Internal MPNE meeting- agenda to come

Lunch and Departure

Panos Kanavos, London School of Economics, UK

Sarah Garner, NICE, UK

Anna Wagstaff, CancerWorld

Simon Crompton, Freelance Journalist and CancerWorld

Imogen Cheese, MelanomaPatientConference, UK

Fredrik Östman, Melanomföreningen, Sweden

Antonella Romanini, Associazione contro il Melanoma, Italy

Andrew Evans, The Talent Institute, Netherlands


Gilliosa Spurrier, Mélanome France and MPNE

Violeta Astratinei, Stichting Melanoom, Melanoma Romania and MPNE

Kay Curtin, Melanoma Support Ireland Patients Network and MPNE

Iain Galloway, MPNE ocular 

Tom van der Velde, and MPNE

Bettina Ryll, MPNE