EU PROTECTS > Our Health > A second opinion: How EU networks share knowledge to save lives

“Having access to the top European specialists was essential to find the best possible treatment for our son.”

K & J

In 2017, the parents of a 3 year old suffering from 20-30 seizures each day were unsure where to turn for help. The cause of their son’s seizures was a very rare brain abnormality.

Through the EU’s epilepsy healthcare network, specialists from Italy, UK, France, Spain, Romania, Sweden and the Netherlands came together to decide on the right course of treatment for the child. Following the surgery, the boy is on the path to recovery, and the family can begin to return to their day-to-day lives.

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A second opinion: How EU networks share knowledge to save lives

In Europe, there are around 30 million people living with rare diseases and conditions, but no country alone has the knowledge or capacity to treat them. In 2017, medical practitioners representing 28 centres in 13 EU countries helped a family doctor diagnose and decide on treatment for a child with a rare case of epilepsy.

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K & J

Parents of patient

Finland

Real names have been withheld to respect the privacy of the patient and the family.

K: “One year ago, we talked with Henna, our doctor in Helsinki. She mentioned this neurological forum, an EU network, which could help find out how to treat our son. We were very happy that Henna found doctors from other places in Europe who knew more about our son’s condition.”

J: “We told our son that the best doctors in Europe would help him. He was excited about the possibility that the epilepsy would go away after the surgery.”

“Over 2 years, our son had several different diagnoses, but no one could tell us what was really wrong.”

 - K & J

Dr Henna Jonsson

Helsinki University Central Hospital

Finland

“The little boy was referred to us in 2016. I’ve been following him since then. His brain scan showed that the cause of his epilepsy was a very rare brain tumour.”

“In Finland as a whole, we only had a few patients with the same diagnosis on record. In October 2017, we presented the case to our colleagues in the European network.”

“With these rare conditions, where very few doctors have enough experience to tackle the case, the more information you can gather, the better.”

 - Dr Henna Jonsson

Professor J. Helen Cross

Great Ormond Street Hospital for Children

United Kingdom

“Our network aims to improve the diagnosis and secure the best available treatments for these rare epilepsy syndromes. Through the network, we discussed the child’s symptoms and the management of the case – all without the boy having to leave his home.”

“Working as part of a European network gives us access to the required level of expertise to find new treatments for rare conditions.”

 - Professor J. Helen Cross

Professor Bertil Rydenhag

University of Gothenburg

Sweden

“We established that the seizures were caused by a malformation of the brain. In this case, open surgery would have been very risky.”

“With my European colleagues, we discussed less invasive surgical techniques. After the network discussion, we as a team suggested using gamma-ray radiation (Gamma Knife®). Once we had the technique, we also had to identify a specialised surgeon to perform it.”

“Through the EU network, we determine the best treatment for patients – either at home or in another European country.”

 - Professor Bertil Rydenhag

Alexis Arzimanoglou

Greek & French, University Hospitals of Lyon

France

“The Marseille medical teams have considerable experience using the technique to treat this rare form of epilepsy. Living in Europe, we have excellent medical centres across different countries. This is because we have EU-supported networks, like the epilepsy specialists’ forum, for everyday discussion on therapies and treatments for rare medical cases. What the EU offers is unique, so it needs to be preserved.”

“Gamma-ray radiation therapy is not available everywhere and is used for specific, often rare, operations.”

 - Alexis Arzimanoglou

Did you know?

30 million

The number of people affected by rare diseases in Europe.

500,000

The number of people across Europe who have been diagnosed with rare forms of cancer every year.

A network for epilepsy

The EpiCARE network has expertise in treating rare epilepsies. Other networks are devoted to bone disorders, childhood cancers and immunodeficiency.

16

EU countries have signed the European Declaration on linking genomic databases across borders. All EU Member States are invited to sign the declaration, which is an agreement to set up a secure EU-wide online platform for medical specialists to research rare diseases, cancer and brain-related diseases.

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