MPNE, the Melanoma Patient Network Europe, is a community of volunteers that is united in its determination to make a difference in Melanoma, not in being an organisation.
While some of us have set up national Melanoma organisations, the community in our network does much more: there are numerous patient forums in different languages run by volunteers, people who share their experiences in blogs and articles, others who make their expertise available to anyone in need. Many of us also work on other projects that at first sight might seem not directly related to Melanoma- data, genetics, research.
As communities cannot enter legal agreements nor apply for grants, we have set up a non-profit entity called MPNEsupport- its sole function is to support the existence and functioning of MPNE.
MPNE therefore can't tell people what to do or what to care about and it does not claim to be representative- because we are not: we are those who change things in Melanoma.
What we do is to help people succeed in changing the things they care about, described in more detail here.
This is a fantastic talk by Daniela Papi. You can easily substitute 'social entrepreneur' with 'patient organisation' to understand the difference between an organisational form and its intended purpose. Sometimes, being a patient organisation is the most effective way to change things. Sometimes, it is not.