MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe
Updated 19th October 2017, BR
The MelanomaPatient Network Europe
is a network of volunteer Melanoma patients and advocates. Core network activities- like forums and personal support are run by volunteers on free social media platforms and collaboration tools. MPNE receives a small amount of donations that allow to cover essential IT tools.
MPNEsupport is a registered Swedish non-profit organisation that supports MPNE activities and organises MPNE events like the annual conference and the autumn workshop.
Neither MPNE nor MPNEsupport advocates are currently remunerated for their work in MPNE.
MPNE meetings are financed by balanced grants or sponsorship from several pharmaceutical companies but we would welcome financial support by our regulatory and HTA authorities.
Funding never gives right to influence program, composition of the faculty or any other conceptual factor but is used to cover conference costs, accommodation and travel support.
Since 2016, MPNE is part of the UM Cure 2020 consortium and receives limited funding to establish and support advocacy in Uveal Melanoma.
The MPNE website is designed, edited and run by Bettina Ryll, MD/ PhD and MPNE founder, unless indicated otherwise. Bettina also privately covered all associated costs for the first two years; from 2016, the costs for the website will be covered from the general MPNE budget.
MPNE research projects are conducted in collaboration in a set-up where MPNE contributes with volunteer hours and all work related to the network and the other party (EMA, GetREAL, UMC) cover all other project-related costs.
Melanoma education is covered privately by patient advocates. We strongly recommend advocates to make use of existing educational resources, fellowships and discounts (such as ESMO, ASCO, EORTC).
Conference visits - since 2015, we aim to offer a limited MPNE fellowships to attend international meetings for Melanoma advocates who are willing to share their new insights with the Melanoma community but who were not able to secure additional funding. Fellowships are financed from the general MPNE budget derived from industry and private donations.
How we finance our activities