MPNCEE 2018

Melanoma Patient Network Europe

Melanoma MPNCEE2018

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in Central and Eastern Europe

21st- 23rd September 2018, Bucharest, Romania1 September 2018, Bucharest

Location Hotel Novotel Bucharest City Centre

Calea Victoriei 37B, Bucharest 010061, Romania

Contact numbers in Bucharest

Hotel- +40 21 308 8500 Transfer from airport- Irina +40726684194.

Conference organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden

Responsible Bettina Ryll Violeta Astratinei Gilly Spurrier

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Dear MPNCEE2018 participant,

A very warm welcome to Bucharest and to MPNCEE2018, our 2nd conference with a special focus on Melanoma in Central and Eastern Europe!

In addition to education and updates about the latest in Melanoma, we will look at different aspects that affect the care of Melanoma patients in the region: what does it take for healthcare system to work efficiently? What does it take to ensure fair access in a country?

We do not only meet to learn but also to discuss what we can do to improve the situation for all Melanoma patients in our countries.

What does a good strategy for Melanoma advocacy look like? What does it take to make it reality?

No network without connection. Please make use of the opportunity to meet your colleagues from other European countries, share experiences and get new ideas!

Bettina, Violeta, Gilly and Biba MPNE

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MPNE principles 1. Patients first 2. Solutions, not Problems.

3. Data, not Opinions. and 4. If you are not doing it- no one will.

Important Your feed-back and ideas are extremely valuable- they help us organise events that bring European Melanoma advocacy forward.

After the conference, you will therefore receive a link to an online survey- an MPNEmonkey- and we appreciate your timely answer.

Travel needs to be arranged for by participants themselves but will be reimbursed up to a maximum amount of 350â‚Ź for economy/ 2nd class travel for people living outside the country and up to 150â‚Ź for those living in the country, and only after full attendance of the conference and images of original travel receipts.

You will receive instructions right after the conference!

Please note that incorrect and incomplete forms cause a lot of extra work and delay re-imbursement.

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Program MPNCEE2018 Version 18th September 2018

FRIDAY, 21st September 13.00- 14.00 Lunch buffet 14.00- 16.00 Coffee & Poster session IDEAS WORTH SHARING Meet your colleagues and present your latest work with a poster!

Please note that we are looking for advocacy projects, so not just problems or ideas, but ideas turned into projects. And obviously, a great opportunity to catch up with old friends and make new ones!

Conference Opening Session

16.00- 16.30 Conference opening and Welcome to Bucharest!

Violeta Astratinei, Melanom Romania and MPNE MPNE- an introduction to the network and the MPNE approach to advocacy Bettina Ryll, MPNE founder

Melanoma- the latest.

16.30 -17.00 Know your stage! The new staging classification in Melanoma Gilly Spurrier and Violeta Astratinei, MPNE 17.00-17.30 Know your drugs! Melanoma therapies explained Bettina Ryll, MPNE 17.30- 18.00 ASCO update

MPNE Kahoot!

18.00-18.30 Test your Melanoma knowledge 18.30- 19.00

From Denial to Denali.

Fredrik ร stman, Melanomfรถreningen and MPNE 20.00 Welcome Dinner Novotel Hotel

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SATURDAY- 22nd September 9.00- 10.30 Session 1 Stage 3 Melanoma- the latest updates chairs Koen van Elst, Netherlands and Silvia Coman, Romania Recently, therapies previously only used for Stage 4 Melanoma have moved into earlier stages as adjuvant or neo-adjuvant treatments.

This session will look at the existing data sets- what do we know about how these therapies work for Stage 3 patients?

• • • •

Stage 3 in detail- understand the differences between substages within Stage 3 Studies in detail- we will go through the latest publications, with particular focus on a) the patient population treated 2) the endpoints of the study and 3) obviously the conclusions Discussion: criteria on how to choose which therapy, considerations for subsequent treatment choices, side effects and their management, access in CEE problems with access to adjuvant therapy- e.g. the latest NICE decisions Further reading Checkmate 238- full free text here Combi AD- full free text here Keynote 054- full free text here Targeted therapy neo-adjuvant: unfortunately pay-walled here 10:30- 11.00 Coffee break 11.00- 12.15 Session 2 Saving Melanoma lives in CEE- successful prevention, early detection and accessing effective and safe treatment chair Biba Dodeva, Macedonia Reducing the long-term mortality of Melanoma will require a joint-up strategy of covering prevention, effective early detection and access to effective treatments.

This sessions will look at different aspects of what a successful long-term strategy should incorporate.

• • •

The need for a holistic approach to advocacy in Melanoma Health as a universal right, not as an optional benefit Taking action to fill existing gaps in a healthcare system Introduction to the session: Melanoma Advocacy in CEE Biba Dodeva, BORKA, Macedonia Improving early detection in Melanoma Suzana Konjevoda, Croatia EPF campaign: Access to Healthcare for all Gabriela Tanasan, European Patient Forum Taking action- building your own cancer hospital.

Carmen Uscatu, Bursa de Fericire, Romania

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Discussion 12.15- 13.30 Lunch 13:30- 15.00 Session 3- Fixing healthcare- data, collaboration and evidence-based policy chair Bettina Ryll, Sweden Many of the problems Melanoma patients are facing are not specific to Melanoma but caused by larger problems within healthcare. In this session, we will look at what it takes to make better decisions in healthcare, what type of data can support this and how collaborations can share the workload.

Evidence-based decision-making in health Vlad Voiculescu, former Romanian healthcare minister Insightful data- you can only solve problems you understand.

Sorin Petcu, IQVIA, Romania The recent EU proposal for increased collaboration in Health Technology Assessments- challenges and opportunities for CEE. Bertalan NĂŠmeth, Syreon Research Institute and ISPOR, Hungary Discussion

15.00- 15.30 Coffee break 15.30- 16.30 Session 4- Access to effective Melanoma therapies chair Violeta Astratinei, MPNE Access to Melanoma therapies in CEE What have we learned about access in Melanoma so far?

Bettina Ryll, MPNE Accessing Innovation in CEE Bertalan NĂŠmeth, Syreon Research Institute and ISPOR, Hungary Primer on clinical trials- how to find them and the small print to watch out for Bettina Ryll, MPNE 16.30- 17.15 Session 5- Making your point chair Bettina Ryll Finding out what patients really need and want is crucial for us as patient advocates- how else are we going to ensure that we provide effective help for patients and convince decision-makers to change direction? Thanks to our networks, we are in contact with many patients and free internet-based tools allow to easily run surveys. Learn in this session how to ask the right questions to end up with meaningful insights though!

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A good survey Jon Garrido, Barcelona

17.15 till dinner

Time for discussion We will use this time to discuss in groups several topics that could make a difference for Melanoma patients: 1 Mapping access to innovative Melanoma medicines in Central and Eastern Europe.

We will use a method similar to Krusenberg 2016 to map which of the new Melanoma therapies are available where and under which conditions Objective: provide advocates with a detailed understanding of access issues in the region and a comparison for their own country 2 Patient Navigation for Ocular Melanoma Ocular Melanoma is a rare and distinct form of Melanoma. Detection, treatment and follow-up for Ocular Melanoma differs from Cutaneous (skin) Melanoma- this can become a particular challenge for patients in Central and Eastern Europe.

This workshop will focus on how we can best help OM patients from the region to receive the best possible care.

3 Advocacy Strategy for Melanoma Complaining is easy, finding solutions is hard. Join us for a mapping and brainstorming exercise about the Melanoma issues specific to Central and Eastern Europe, how problems relate to each other and how we could contribute to possible solutions.

18:30 Conference Dinner

Walk through Bucharest’s old town

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SUNDAY- 23rd September please check out after breakfast

9.00 -10.00 Session 5 Knowledge is power- but effective education requires more than good intentions.

Knowledge protects patients and education is an important part of our work as advocates.

This session will look at why education matters and how advocates can educate themselves in order to become better educators.

Chairs- Gilly Spurrier, Violeta Astratinei Knowledge protects- a nurse's perspective.

Daniela Amey, MPNE Spotting pseudoscience Gilly Spurrier, Melanoma France and MPNE Educating yourself.

Monica Althamer, MagiCamp Association, Romania Discussion How do we ensure Melanoma patients receive correct information?

How do we best share training opportunities for Melanoma patients and patient advocates?

10.00- 10.45 Session 6 Update from the network PART I Hear what your colleagues have been working on during the last year and be inspired!

10.45- 11.15 Coffee break 11.15- 13.00 Session 6 Update from the network PART II Hear what your colleagues have been working on during the last year and be inspired!

13.00- 13.15 Summary and conference closure 13.15 Lunch and departure

Safe travel and looking forward to seeing you again soon

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Upcoming MPNE events QuickStart@EADO- 6-9th November 2018, Barcelona Krusenberg 2018- November 2018, Krusenberg, Sweden MPNE 2019- March 2019, Brussels date tbc

Useful links MPNE website http://www.melanomapatientnetworkeu.org/ Main MPNE forum https://www.facebook.com/groups/MelanomaPatientNetworkEU/ MPNE open page https://www.facebook.com/Melanomapatientnetworkeurope/ MPNE events- don’t forget to subscribe here! https://www.facebook.com/Melanomapatientnetworkeurope/events Melanoma in CEE https://www.facebook.com/groups/melanomaeasteuropean/ Rare Melanomas https://www.facebook.com/groups/MPNEOcularRare/ Melanoma in children https://www.facebook.com/groups/MPNEunder18/ WECAN https://www.facebook.com/WECANadvocate/ ESMO patient advocates https://www.facebook.com/groups/ESMOpatientadvocates/ Twitter We use our personal accounts!

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Good to know Currency in Romania RON- Romanian Lei 1 RON = 0.22 EUR Dresscode Business casual Weather prediction will be 25- 30 degree, so please bring light clothing!

Closest Airport: Bucharest International Airport Transfers We have organized transfers for those of you who have submitted their travel details. You will be picked up by a driver with a conference sign at the information desk, when you come out of arrivals to the left. In case of problems, please contact Irina under +40726684194.

Incidentals The conference budget covers conference participation, accommodation for 2 nights and meals during that time; please note that you will be responsible for all other extra costs.

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