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Blog: Innovate and educate to demystify epilepsy #EpilepsyDay

Met dank overgenomen van C.M.F. (Carlos) Moedas, gepubliceerd op dinsdag 10 februari 2015.

The human brain is one of life's most beautiful and complex mysteries. We are all wired differently. We each bring our own thoughts, passions and emotions to life in a different way, but what is most remarkable is how little we know about this vital organ. How little we know about the very thing which sets us apart and, at the same time, unites us as human beings.

Due to this lack of understanding, neurological disorders have too often been consigned to the background. Not often talked about. Often misunderstood. Two great challenges still lie before us. Somehow they've always been there, but we are yet to overcome them.

The first is the need for innovation. Innovation that helps us to understand the fundamental, underlying structure of the brain. Innovation that will save lives by inspiring the breakthroughs we've needed for decades.

As our understanding of neuroscience becomes increasingly complex, so should our approach to healthcare. We need sophisticated treatments, based on modern-day science, better tailored to an individual patient's needs. So, meeting this first challenge relies on continuing fundamental research, maintaining excellence in science and innovating medical treatments.

The second challenge is much more arduous. We need to remove the stigma that affects people's lives. We need to erase stigma all together.

In the developed world our societies must be exemplary in removing obstacles rather than perpetuating them and in developing countries the fear, prejudice and suspicion surrounding conditions like epilepsy must be countered with education. Throughout the world, people have the right to discrete, effective and affordable treatment.

Above all, it's important to demystify epilepsy. There are many great role models and inspiring civil society organisations taking part in world #EpilepsyDay, 9 February 2015. People who don't let epilepsy hold them back from life. But we as governments and public institutions shouldn't allow them to be held back either. Our efforts should enable every citizen equal opportunity to participate in society and experience life to the fullest.

According to a report by the Secretariat of the WHO Executive Board, epilepsy accounts for half a percent of global illness. That's more than fifty million people at higher risk of premature death across the globe. Fifty million people dealing with the social and economic consequences of something their communities are often ill-equipped to deal with.

Further progress in the technology of epilepsy management, from basic research to diagnosis and treatment, is still very much needed.

Innovations need to be cheap and accessible.

Innovations should lower the patient's risks, as well as combat stigma.

Innovations should improve lives, as well as save them.

Take the new Embrace smartwatch first developed in an MIT Media Lab, designed to detect seizures and alert carers. It works by monitoring minute changes in the wearer's skin, combining medical sensors with mobile app technology. Many new solutions sensitive to the socio-economic dimension of neurological disorders and epilepsy may lie in this multidisciplinary approach: combining medical research with information technologies. Almost ten years ago, Rita Levi-Montalcini, winner of the 1986 Nobel Prize in Medicine said:

"Much deeper knowledge of the brain is necessary. […] Research should be based on the convergence of different interconnected scientific sectors, not in isolation, as was the case in the past."

If we're to overcome those two great challenges of ours, it will be by bringing many disciplines and sectors together. For this reason, the first calls under Horizon 2020 offered new opportunities and close to 550 million euros to scientists, companies and patient organisations working together to advance epilepsy research. In 2013 alone, the Commission undertook a comprehensive effort on epilepsy research with a dedicated budget of 45 million euros.

These projects are now working on developing new biomarkers for better diagnosis, refined therapeutic approaches including for paediatric epilepsies and deepening our understanding of some of the causes of epilepsy. IMI2's 3rd call for proposals, which has a deadline for submission of 25 March 2015, calls for applications developing predictive tools for non-invasive remote monitoring of epilepsy.

Has the international community done enough? Not by a long way, but there are positive signs everywhere. There are positive signs in every commitment we make to tackle epilepsy. We haven't reached the summit, we're not even at base camp, but we are awake and alert to the task that lies before us.


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