MPNCEEhubs2019

Melanoma Patient Network Europe

Melanoma

in Central and Eastern Europe

MPNCEEhubs 30th August- 1st September 2019

MPNCEEhubs2019

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30th August- 1st September 2019, Skopje

Location Park Hotel, 1732 street no. 4, Skopje 1000, Macedonia https://parkhotel.mk

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden Responsible Bettina Ryll Biba Dodeva Gilly Spurrier Violeta Astratinei Volodymyr Chekhmir

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Dear MPNCEEhubs participant, Welcome to our first MPNCEEhubs workshop!

A new format!

With a growing number of active Melanoma patient advocates in Central and Eastern Europe (CEE), we would like to replicate the successful concept of our annual Krusenberg MPNEhubs meetings to create an effective platform for advocacy efforts in CEE. And we are excited to be in Skopje for the first MPNCEEhubs ever- which we hope will become as successful as the Krusenberg edition.

What we are going to do New treatments are for the first-time giving hope to Melanoma patients everywhere. We will discuss the most advanced therapies in Melanoma and further trends in research. We hope to give you useful tips on finding good clinical trials and how to understand and explain Science to Melanoma patients.

However, hope is not evenly distributed as patients in Central and Eastern Europe continue to struggle to access effective prevention, early detection and effective treatments. Knowledge about Healthcare Systems and Health Technology Assessment becomes a must for every patient advocate. We will map the access to the different Melanoma therapies approved in the European Union to identify access issues and discuss potential solutions.

There will also be plenty of time to share your successful advocacy projects and discuss with colleagues!

We wish you a productive weekend!

Bettina, Biba, Gilly, Violeta and Volodymyr MPNE2019 scientific committee

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Program MPNCEEhubs Version 29th August 2019

Friday, 30th August 2019 please bring your own tablet/ laptop 13.00- 14.00 Check-in and Registration 14.00- 15.00 Welcome Purpose of the meeting and elevator-introduction! present yourself in 2 min All Elevator introduction explained Patient advocacy is not a usual field of work, so most people we meet will have never heard about it. Often, we meet people in passing- so the art is to present the essential of who we are and what we do in the time it takes to share an elevator with someone.

Out of this our elevator- introductions! were born- we set a timer and everyone gets exactly 2 min to present her- or himself. Please prepareand practice makes perfect!

15.00- 15.30 Session 1 – Knowledge protects: why Melanoma education matters Understanding current Melanoma therapies Melanoma therapies have changed a lot since 2011- but not every patient understands that they aren't chemotherapy and that side effects are different Know your Stage!

Why staging matters and how to best teach our patients Bettina Ryll, Gilliosa Spurrier and Violeta Astratinei 15.30- 16.00 Coffee

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16.00- 17.30 Session 2- Melanoma therapies- what do we have, what’s coming next and clinical trials in CEE to watch out for What are upcoming developments in Melanoma, the importance of clinical trials for Melanoma patients and what can we as network do?

Exercises - how to find a clinical trial - how to draft a medical history 17.30- 19.00 Session 3- Review of the access maps for Melanoma drugs in Central and Eastern Europe We will map the availability of Melanoma therapies in Central and Eastern Europe 20.00 Dinner Continue the discussion with your team over dinner

Saturday, 31st August 2019 8.00- 9.00 Breakfast 9.00-10.30 HTA Workshop Part 1 Mark Molnar, Ideas & Solutions, Hungary www.i-s.hu 10.30-11.00 Coffee 11.00- 12.30 HTA Workshop Part 2 Mark Molnar, Ideas & Solutions, Hungary www.i-s.hu 13.00 – 14.00 Lunch 14.30 – 15.30 HTA Workshop Part 3 Mark Molnar, Ideas & Solutions, Hungary www.i-s.hu MPNCEEhubs 30th August- 1st September 2019

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15.30- 16.00 Coffee 16.00 -17.30 Immuno-oncology and Melanoma in detail John Haanen, NKI Amsterdam, Netherlands Immune therapies in Melanoma in detail- how do they work, what are recent developments? Please prepare your questions!

17.30-18.30 Session 7- Groupwork: review your access maps after today’s learnings 19.30 Conference dinner time tbc

Sunday, 1st September 2019 Advocates only- includes planning for MPNCEE2020 8.00- 9.00 Breakfast Please make sure you check out 9.00- 10.30 Advocacy Session 1: Advocacy in CEE The Rigvir experience Olga Valcina, Latvia

10.30- 11.00 Coffee 11.00- 12.30 Advocacy Session 2: Planning for MPNCEE 2020 12.30- 12.45 Workshop Summary and Closure Bettina Ryll, MPNE 13.00- 14.00 Lunch and Departure

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And before you leave Your feed-back is extremely valuable to us- it is your suggestions that ensure that we continuously improve! Thank you for taking the time to share your ideas with us!

Travel costs will be reimbursed up to the maximum amount we are able to afford as we have realised that flights were very expensive- for economy/ 2nd class travel after full attendance of the conference and against complete travel receipts.

Please note that the reimbursement is now fully electronic - you will receive an online form with detailed instructions. As always- one hard early deadline, then comes the mop-up version for the laggards. So if you urgently need the reimbursement, please submit as early as possible!

No attendance, no receipt = no reimbursement.

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Good to know Currency in Macedonia MKD - Macedonian denar 1 EUR = 61.8MKD Dresscode Business casual Weather prediction will be 32 Celsius degree during the day and about 16 Celsius degree at night- so please bring very light clotting, but also a light jacket for the evenings!

Closest Airport: TAV Skopje International Airport Transfers We have organized transfers for those of you who have submitted their travel details via slack. You will be picked up by a driver with a workshop sign, when you come out of arrivals to the left. In case of problems, please contact: Srdjan under +38070204583, Mitko under +38978439831 or Biba under +38975396142.

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.

Looking forward to seeing you all in Skopje!

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