MPNErare2017A Fair Deal for Rare Melanomas.


6th- 8th October 2017

Amsterdam, 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?




Attend MPNCErare2017


  • a meeting for European patients with rare forms of Melanoma- Melanoma of the eye (ocular Melanoma), Melanoma that started on the inner surfaces of the body (mucosal Melanoma) or Melanoma that started on hand or feet (acral Melanoma) and anyone interested in rare Melanomas
  • understand the particular challenges that come with having a rare disease
  • meet others who share your condition and work together on solutions




PROGRAM

under construction-

please come back regularly to check for up-dates!


Friday, 6th October 

Rare Melanomas- disease and treatments



Afternoon

​Arrival 

Workshops

15.00- 16.30 

you will be able to choose your workshop upon registration


16.30- 17.00 Coffee 

17.00 -18.30
The grand debate 

19.00- 20.00
Reception- meet your colleagues! 

20.00 Dinner




Saturday, 7th October
Challenges and opportunities of being rare


9.00 -10.30
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
speaker tbc

1.2 Detecting, following and treating rare Melanomas- the clinician perspective

speaker tbc
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.

speaker tbc

Further reading
European Reference Networks 

10.30-11.00 Coffee break

11.00-12.30
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

speaker tbc

2.4 Financing the unknown- a payer perspective

Ad Schuurman, ZIN, tbc

Further reading
EMA workshops on single arm trials 

Lunch 12.30-14.00


14.00- 15.30
Session 3. Precious data- clinical trials in rare Melanomas

3.1 A patient experience

speaker tbc
3.2 Novel clinical trial designs for rare conditions
speaker tbc

3.3 

3.4 Power in numbers — a patient-built registry for ocular melanoma
Andrew Evans, MPNErare


Further reading


15.30-16.00 Coffee break

16.00 - 17.30
Session 4. Finding cures for rare conditions

4.1 Orphan drugs

speaker tbc
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
4.4

 

17.30- 18.30 
Session 5. 



19.00 Reception


20.00 Conference Dinner




Sunday, 8th October 
Advocacy Sunday

9.00 -10.30
Session 5 


10.30- 11.00 Coffee break


11.00- 12.45
Session 6. 


Summary and conference closure

13.00 Lunch and departure


Looking forward to seeing you all in Amsterdam!

​​





Attendance of the conference

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?


MPNErare 2017


The challenges

of having a rare form of Melanoma

Taking important decisions with little evidence

Clinical trials in

rare Melanomas

No more Melanoma deaths in Europe. Access to prevention, early detection and effective treatment for everyone.

Melanoma Patient Network Europe