NET Patient Foundation Attends EURACAN Meeting

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources. EURACAN is the ERN for adult rare solid cancers. 

NPF’s CEO, Catherine, attended the  EURACAN meeting of all domains on the 6th and 7th January. Of course as you can imagine BREXIT was a hot topic!

There were various discussions about the funding issues for the EURACAN initiatives, access for patients and health care professionals who are not within a specialist service, and where there may not be a specialist service in their country.

This is year 3 of the project, and we could see some clear paths ahead in terms of strategy, roles and responsibilities and the desire to bring more members on board alongside associate members.

We had a separate NET Domain meeting where we highlighted some clear objectives and plans for the rest of 2019. We have a lot of work to do to support NET patients in EU countries without any specialised service and this is a key issue. We are able to provide support through a tele-consultation system supported through the European Commission. There were many conversations about this system, including how patients can access the outcome of the tele-consultation, and the obvious issues of not being able to access treatments and pathways suggested by the experts. There needs to be further investigation into the cross border healthcare initiative, and buy in from the individual hospitals looking for support. We cannot expect patients to have to fund any costs associated with cross border care, as we are certainly unsure of the system of claiming back those funds!

How the system should work

Myself and Teodora from INCA represented the patients at they meeting, and we had some fruitful discussions with our domain, and next steps for 2019.