MPNCEE2017_program

Melanoma Patient Network Europe

Melanoma in Central and Eastern Europe MPNCEE2017

23rd- 25th June 2017, Zagreb, Croatia

www.melanomapatientnetworkEU.org MPNCEE 2017- 23rd- 25th June 2017- Zagreb

1

Location Hotel Dubrovnik Ljudevita Gaja 1, PP 246, 10000 Zagreb, Hrvatska info@hotel-dubrovnik.hr

Contact numbers in Zagreb Tatjana: +385 9 1253 7017 Nikolina: +385 9 2153 8901 Hotel Dubrovnik: +385 1 4863 555

Conference organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden

Responsible

Bettina Ryll Violeta Astratinei Zrinjka Pastar MPNCEE 2017- 23rd- 25th June 2017- Zagreb

2

Dear MPNCEE2017 participant, a very warm welcome to MPNCEE2017, the first conference of the Melanoma Patient Network Europe that is specifically dedicated to Melanoma in Central and Eastern Europe.

New therapies have turned metastatic Melanoma from a desperate disease to one with real hope. However, all over Europe, it is now access to these therapies that limits survival.

Patients in Central and Eastern Europe suffer in particular.

MPNCEE2017 will therefore focus on the needs of Melanoma patients in Central and Eastern Europe- and on what we as a Melanoma network can concretely do.

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 and Zrinjka MPNE

MPNE our vision Surviving Melanoma.

Access to effective prevention, early detection and treatment for everyone. our principles 1. Patients first.

2. Solutions, not problems.

3. Data, not opinions and 4. if you are not going to do it- no one will.

rd

MPNCEE 2017- 23 - 25

th

June 2017- Zagreb

3

Program MPNCEE2017 Version 18th June

Friday, 23rd June Opportunity- extra sign-up required 14.00- 15.00

Introduction to Dermoscopy Zrinjka Pastar 15.30-16.00 Welcome coffee 16.00- 16.30

Conference Opening Session Welcome to Zagreb Zrinjka Pastar, Croatia Introduction to the conference Bettina Ryll, MPNE MPNCEE- Melanoma in Central and Eastern Europe Violeta Astratinei, MPNE 16.30 -18.30

Melanoma QuickStart An introduction to our network and Melanoma in general.

•

• • • •

Introduction to the Melanoma Patient Network Europe Bettina Ryll, MPNE founder How we got to where we are and how we work: Evidence-based advocacy and MPNE principles Melanoma Essentials Antonella Romanini, Italy Introduction to Melanoma therapies Bettina Ryll, MPNE, Sweden Panel discussion: accessing Melanoma treatments abroad Lucian Stanciu, Romania and Conference participants with personal experience ASCO2017 update Bettina Ryll, MPNE Time for questions 18.30- 19.00 A Melanoma life well-lived.

Fredrik Östman, Sweden 19.15- 20.00 MEET YOUR COLLEAGUES reception 20.00 Welcome Dinner

MPNCEE 2017- 23rd- 25th June 2017- Zagreb

4

SATURDAY- 24th June Melanoma in Central and Eastern Europe 9.00- 10.30 Session 1 Understanding the problem: accessing life-saving medicines in Melanoma 1.1 The fight for access to effective medicines in Melanoma - the CEE experience Violeta Astratinei, MPNE 1.2 Treating Melanoma patients from abroad Antonella Romanini, Italy 1.3 Mapping disparities in Melanoma in Europe Lidjia Sekulovic, Serbia 1.4 Benchmarking/ indicators to monitor progress in access Ana-Maria Forsea, Romania 10.30 - 11.00 Coffee break 11.00- 12.30 Session 2 Health economics in CEE Central and Eastern Europe faces particular challenges when it comes to the financing health care. This session will provide an introduction on how to first measure the burden of cancer, how to evaluate the benefit of potential new therapies by Health Technology Assessment bodies and insurers and address specific challenges of the region.

2.1 The crisis of cancer medicines in the region Vlad Voiculescu, former Minster of Health, Romania 2.2 EUnetHTA and CEE Mirjana Huić, EUnetHTA and Agency for Quality and Accreditation in Health Care and Social Welfare, Croatia 2.3 Health Technology Assessment- the Romanian experience Vlad Mixich, former Health Ministry, Romania 2.4 The value of early detection.

Early detection spares patients enormous suffering and is both cost- effective as well as potentially cost-saving. Piotr Rutkowski, Warsaw, Poland 12.30- 14.00 Lunch 14.00- 15.30 Session 3 Action for better access to medicines in Melanoma The political environment influences access to innovative therapies. How can policy and advocacy action help to gain access for desperate patients in diseases like Melanoma?

3.1 Treating Melanoma patients with innovative medicines in CEE Piotr Rutkowski, Warsaw, Poland 3.2 Action for Access to effective cancer therapies Vlad Voiculescu, former Minster of Health, Romania

MPNCEE 2017- 23rd- 25th June 2017- Zagreb

5

3.3 Advocating for access Tamas Berekzky, EATG, Hungary 3.4 Credibility in patient advocacy Sarunas Narbutas, POLA, Lithuania 15.30 -16.00 Coffee break 16.00- 19.00 Workshop Successfully advocating for patients in Central and Eastern Europe.

Patients increasingly demand participation in healthcare-decision making, also in CEE. The impact depends on the level of knowledge, making capacitybuilding a top priority. Can programs used in other parts of the EU simply be transferred or do they need adaptation for the region? If yes, in which sense?

Tamas Bereczky, EATG, Hungary Sarunas Narbutas, POLA, Lithuania

Guided tour of Zagreb 21.00 Gala Dinner

SUNDAY- 25th June

please do not forget to check out from the hotel!

9.00 -10.30 Session 4 Prevention is the best cure. Early detection in Melanoma No one chooses a Melanoma diagnosis. So what can we do to prevent and failing that, detect it as early as possible? And how can we ensure our healthcare systems are effective enough to deliver that type of prevention? What can we do as a network?

4.1 Challenges in Prevention & Early detection with examples of successful early detection actions in CEE Zrinjka Pastar, Croatia 4.2 Vitamin D - a new intervention?

Ana Ljevar, Croatia 4.3 ‘You can’t escape your skin. Get it checked!’ The 2017 Macedonian campaign.

Biba Dodeva, Borka, Macedonia 4.4 Group discussion How do we know that our campaigns are successful?

10.30- 11.00 Coffee break MPNCEE 2017- 23rd- 25th June 2017- Zagreb

6

11.00- 12.30 Session 5 Living well with Melanoma Fortunately for us, the number of Melanoma survivors is constantly rising, also in CEE. Good management of side effects, attention to overall Quality of Life and the necessary support therefore become important that Melanoma patients not only live, but also live well.

5.1 What patient forums tell us- quality of life, side effects and how to cope with Melanoma Bettina Ryll and Violeta Astratinei, MPNE 5.2 Reporting side-effects- what can we learn from direct patient reports?

Adriana Andrić from Halmed, Croatia 5.3 Social support and palliative care Nikolina Nizic, Croatia 5.4 Group discussion What can we as network do to ensure Melanoma patients live well?

12.30- 13.00 Summary and conference closure Zrinjka Pastar and Bettina Ryll 13.00 Lunch and departure

And before you leaveYour feed-back is valuable- it helps us organise events that bring European Melanoma advocacy forward. You will receive a link to an online survey- an MPNEmonkey- and we appreciate your timely answer.

Reimbursement of travel expenses for economy/ second class travel up to a maximum of 300 Euro after attendance of the full event against travel receipts and a completed reimbursement form only.

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

Safe travel and looking forward to seeing you again soon!

MPNCEE 2017- 23rd- 25th June 2017- Zagreb

7

Good to know Currency in Croatia HRK- Croatian Kuna 1 EUR = 7.4 HRK Dresscode Business casual Weather prediction will be above 30 degree, so please bring light clothing!

Closest Airport: Zagreb Pleso Transfers You are responsible for organising your own transfer to the hotel.

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.

We thank for their support- pending

MPNCEE 2017- 23rd- 25th June 2017- Zagreb

8