Oncologist at Aarhus University Hospital (AUH) Ninna Aggerholm Pedersen is part of EU networks where expertise in the rare form of cancer sarcoma is shared across national borders.

With a large grant from the EU in 2017, member states joined together to establish networks of healthcare providers with the aim of sharing expertise and improving access to treatment for patients with rare and complex diseases across the EU.

The various networks are called European Reference Networks (ERN), and across the EU, more than 1,200 medical centres within various medical specialties are currently connected to these ERNs.

AUH is represented in 19 out of the 24 networks. One of them being EURACAN, where Oncologist Ninna Aggerholm Pedersen, together with Italian, French and other international colleagues ensure that patients with the rare form of cancer sarcoma receive the best treatment.

"You are not alone"

- Having a rare and in most cases incurable disease such as sarcoma is associated with great loneliness for the patient. You can feel extremely lonely, and therefore one of the major focus areas for us in EURACAN is to make our patients aware that while they may be one of the few sarcoma patients in their own country, they are one of many throughout Europe.

- At AUH, we only have approximately 150 sarcoma patients each year, and some types of sarcoma only have two patients per year. In France, there are approximately 1,200 patients with sarcomas, and in Italy approximately the same. With data not only from Denmark but from the entire EURACAN network, we get a much bigger data pool to create clinical guidelines from. All in all, it strengthens our knowledge about the treatment of sarcomas, and ultimately means that patients receive the best possible treatment.

- Through EURACAN, we are part of a network of European specialists in the treatment of sarcomas, which means, among other things, that every two months we participate in an international multidisciplinary conference, where, primarily, complicated cases are discussed. This is a chance to get international sparring on the treatment we have suggested.

 - We have been part of this conference twice and the three patients who have been on it as cases have appreciated it, as they can see that it is not just me as a doctor at AUH who looks at their case, but that it is considered together with specialists from all over Europe. It gives them peace of mind to know that Europe agrees with our recommendation or has suggestions for changes.

In order to apply for membership of an ERN, you must be approved in the Danish Health Authority's plan of Danish Specialised Hospital Services to carry out highly specialized functions in a given area. Of the 24 networks, AUH has full membership with 17 of them and partial membership with two.