Melanoma Patient Network Europe
Melanoma is a cancer starting from melanocytes, the pigment-producing cells of the body.
Often, Melanoma starts on the skin with a mole. However, we have melanocytes in many places of our body.
Melanoma can therefore also start in the eye, on the palms of our hand and soles of our feet or on any inner surface of the body.
When Melanoma is discovered at a stage when it has spread, it can become impossible to identify the place where it has started.
Mostly, it is adults how are diagnosed with Melanoma and many of them are quite young- but we sometimes also see Melanoma in children.
The MPNE community
MPNE is a community of Melanoma patients, carers and advocates who want to make a difference. We aren't a typical patient organisation- more a group of like-minded people where everyone contributes.
While it might look random and free-floating at first glance, there is usually a considerable amount of thought not only behind what we do but also how we do it.
Our way of working is adapted to our lives as volunteers: most of us have jobs, families and not at least Melanoma to take care of, too. Concretely this means we tend to split jobs into many small units where many contribute a little- and we work evenings, weekends and holidays. And there is no office either- it's a system set up to split work over volunteers.
We haven't found many communities working like us- if you are one, please do reach out!- but there are overlaps with how mission-driven innovation ecosystem (we'd be a bottom-up one) and user-driven Living Labs work, just that we ended up here because it was the most effective way of working for us.
A big part of us is that we experiment a lot- one doesn't go new places by doing more of the old. And we have been asked many times to document the way we work....First, iteration is a critical part of it- we try something, evaluate, refine, test again. So things always feel like work in progress and not quite 'done' yet. Secondly, closure is the part of project management we are really terrible at.
To address this, my 2022's New Year's resolution was to write 52 blogs, 1 per week with concepts, reflections and insights about MPNE. The fact it's 2023 and we still aren't at 52 tells you how it 's going ;)
But it's work in progress!
MPNE at a Glance
We are European Melanoma patients, carers and patient advocates. We want to see as many Melanoma patients survive as possible. We have therefore built a system of networks that allows us to bridge language barriers and share Melanoma knowledge reliably and fast across large geographies. We work according to local priorities but shared working principles- our MPNE principles.