Initiative of the European Commission: Supporting Ukraine, neighbouring EU Member States and Moldova
The European Commission has set up a working group
Supporting Ukraine, neighbouring EU Member States and Moldova
to help coordinate the efforts of NGOs and other actors. As you all know, this is the largest displacement of people we have seen in Europe since the Second World War- and we *have* to be effective if we want to minimise the damage that this crisis does to lives and our societies.
This working group is now supposed to help facilitate that. Here are the co-chairs of the working group and the patient side, it is EURORDIS and MPNE who liaise with the ERNs and ECO respectively
· European Cancer Organisation (ECO) – in liaison with the Melanoma Patient Network Europe (MPNEurope);
· European Federation of Nurses (EFN);
· European Reference Networks (ERN) –in liaison with the Rare Diseases Europe (EURORDIS).
This has obviously very little to do with Melanoma- so here some background.
Since the war on Ukraine started, members of of the WECAN (Working group of European Cancer Advocacy Networks) are increasingly coordinating their activities to help cancer patients.
WECAN works in two ways:
1. consensus building between all networks for a joint position
2. bottom-up, partner-initiated, involving those interested
The currently ongoing activities are a bottom-up initiative and were initiated by Natacha Bolanos from the Lymphoma Coalition and Bettina Ryll (that's me) from MPNE. Members from inside and beyond the WECAN community have joined.
In the set-up phase, we had daily 9am calls. At the moment and as processes are running, we have reduced this to twice-weekly. The calls serve to touch base, to share challenges we have encountered and to help each other to tackle them and to align on issues.
In addition, we have a permanent Ukraine Crisis channel where we can help each other directly and a crowd-sourced intelligence board where we collect resources.
In our typical WECAN working style, people join and leave initiatives, depending on their needs. Our personal working styles differ as do our networks- cancer communities have specific characteristics, needs and traditions- so there is no single size fits all approach. While it might look messy it means that we are likely to have someone in our extended networks who knows how to deal with a given situation and at this point
a big THANK YOU to all my amazing colleagues from the advocacy community.
They say, it's in times of crisis that you realise who your real friends are. We are in cancer- and many of us have lived this. I would add that it's in times of crisis that you realise who gets work done. And also, that effective communication and smart documentation aren't a luxury but become essential when you want to move at speed.
It's also a time when to focus on what one is really good at- and let others do what they are really good at. As anyone who knows me knows, I'm rather allergic to sloppy thinking and l like smart processes, so that's what I'm now doing. Including bugging people to document what they are doing which tends to be not very popular until a bit later ;-).
So, what's next?
You are helping patients from Ukraine and are stuck....
You see this policy issue that needs addressing....
You are looking for someone who could help you with something...
you can try to post it on the Health Policy Forum. The registration is a real pain, see instructions below, but at least afterwards, you know that the people who post there are real and it then saves a lot of effort sifting through fake news. There are also some very knowledgeable and helpful people on there who know how to find in-depth information on specific topics which has been really helpful.
we'll share the information about the upcoming webinars broadly via our social media channels so you don't miss it.
And of course, for any concrete issue or suggestion, please contact me or any of the other co-chairs.
How to sign up to the Health Policy Platform - as I keep getting asked....
(information from the Health Policy Platform team)
(1) Go to this website
If you haven’t registered yet, please fill in the registration form. Once you receive your confirmation email, you will be able to request access to the network.
(2) Access (or request access) to the network:
and (3) publish a news item with the information you wish to share:
and this is the user guide to the platform: https://webgate.ec.europa.eu/hpf/assets/documents/User_guide_2021_EUHealthPolicyPlatform.pdf