No more Melanoma deaths in Europe. Access to prevention, early detection and effective treatment for everyone.
Melanoma Patient Network Europe
MPNErare2017A Fair Deal for Rare Melanomas.
6th- 8th October 2017
Leiden, the Netherlands
Patients with rare forms of Melanoma face particular challenges when it comes to diagnosis, follow-up and treatment.
MPNErare2017 will focus on the particular needs of these patients and the challenges of being rare when it comes to accessing treatment and clinical trials. Meet like-minded people and discuss what we as advocates can do so that also rare Melanoma patients get a fair deal?
please come back regularly to check for up-dates!
Friday, 6th October
Rare Melanomas- disease and treatments
you will be able to choose your workshop upon registration
16.30- 17.00 Coffee
The grand debate
Reception- meet your colleagues!
Saturday, 7th October
Challenges and opportunities of being rare
Session 1. The problem of the black swan: having a rare Melanoma
1.1 The challenge of being diagnosed with a rare Melanoma- the patient perspective
1.2 Detecting, following and treating rare Melanomas- the clinician perspective
1.3 European Reference Networks- what are they and why do the matter for us in rare Melanomas?
Iain Galloway, MPNErare
1.4 The challenges of rare cancers.
European Reference Networks
10.30-11.00 Coffee break
Session 2. What makes decision-making in rare cancers so challenging?
2.1 How to best treat patients with scarce evidence- the Sarcoma example
Paolo Casali, Milan, tb
2.2 How to establish risks and benefits in rare conditions-a regulatory perspective
Francesco Pignatti, EMA, tbc
2.3 HTA perspective
2.4 Financing the unknown- a payer perspective
Ad Schuurman, ZIN, tbc
EMA workshops on single arm trials
Session 3. Precious data- clinical trials in rare Melanomas
3.1 A patient experience
3.2 Novel clinical trial designs for rare conditions
3.4 Power in numbers — a patient-built registry for ocular melanoma
Andrew Evans, MPNErare
15.30-16.00 Coffee break
16.00 - 17.30
Session 4. Finding cures for rare conditions
4.1 Orphan drugs
4.2 Run your own clinical trials
Eric Low, previously CEO Myeloma UK, tbc
4.3 All a matter of incentives!
Dimitrios Athanasiou, Duchenne Muscle Dystrophy, Greece, tbc
20.00 Conference Dinner
Sunday, 8th October
10.30- 11.00 Coffee break
Summary and conference closure
13.00 Lunch and departure
Looking forward to seeing you all in the Netherlands!
conference language is English
Who should apply?
Melanoma patients, carers and advocates, in particular with rare forms of Melanoma or with a special interest in rare Melanomas.
Please note that attendance is upon application only.
Not a Melanoma advocate but still interested to attend? Please contact us
What does it cost?
Accepted advocated will receive free registration and accommodation for 2 nights at the conference venue. Extra nights are at participants' own expenses.
Travel needs to be arranged for by participants themselves but will be reimbursed up to a maximum amount of € for economy/ 2nd class travel after full attendance of the conference.
Please look for the best deals and keep the original receipts of your bookings.
Don't want to travel alone? Use the MPNE facebook group to find fellow travellers!
Cannot afford to pay ticket upfront? Please contact us.
What can we do?
of having a rare form of Melanoma
Taking important decisions with little evidence
Clinical trials in