Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
Melanoma Patient Network Europe
Knowledge is power.
Knowledge is protection.
Last update 10th June 2017 BR
there is a large amount of medical information about the cancer and the treatments to take in. Patients need to make decisions about treatments and they can come with considerable consequences.
is complex on a good day, in the BLACK HOLE it seems impossible to digest. Please do not forget that medical students and oncologists spend years in training, so this is a lot of information and not all of it can be made really, really simple.
is a scary diagnosis to be dealt with and it is normal to feel confused, numb and unable to think straight.
Everyone of us with an Melanoma experience remembers the BLACK HOLE at the beginning only too well.
there is a lot of Melanoma information on the Internet and it is important to understand what is trustworthy and what is not.
You can also join our closed MPNE forum on facebook to meet other European Melanoma patients and carers, ask questions and learn. While a forum cannot provide medical advice, our aim is to educate patients about the latests developments in Melanoma and help them to find and understand trustworthy sources of medical information. All it takes is interest, no prior medical education necessary!
All claims related to Melanoma and its treatments on our forums need to be referenced and come from a reliable source (like NEJM, Lancet, Nature, ASCO, ESMO)- and there is a growing crowd who can help you do that.
In the past, we organised a workshop on how to read medical papers and members of our network regularly blog under MPNEat..... about the medical conferences they are attending to share the latest Melanoma information, the last one being ASCO2017.
we- like you- have been in that very BLACK HOLE. Learning about Melanoma and which treatments are available is the fastest way out.
Knowledge gives you back some control over what feels like a life spiralled out of control.
Enabling Patients to become active partners in their care.
MPNE provides information that
1. educates patients about their condition and the different treatment options to allow them to make informed choices
2. enables patients to have meaningful and constructive discussions with their medical care team.
For this reason, Patient Information needs to be
- accurate, up to date and verifiable (referenced so everyone can track the source)
- accessible (written in a language an interested but non-specialist reader understands)
- enabling (explaining but not leaving out medical terms so that patients understand their medical team and can communicate)