Month of the Brain
Understanding the human brain and its diseases is one of the greatest scientific and philosophical challenges. During the last decades, brain research has made great progress on all fronts but much more is still to be discovered.
Advances in neuroscience are crucial to keep our ageing societies and our economy healthy. Brain-related disorders will affect at least one in every three of us during our life and treating these disorders costs already now some 800 billion Euro in Europe every year.
Deciphering how our brain works is good for our health, our society and our industrial competitiveness. It has an important role to play for the achievement of the Europe 2020 strategy and of the Innovation Union.
Therefore, May 2013 was designated as European Month of the Brain by the European Commission. Read our report below or CLICK HERE to access the Recommendations and Conclusion from the Month.
What was EFNA’s role?
EFNA played a major role during the planning for EMOB. Our President, Audrey Craven, represented patients on the Scientific Steering Committee. She also spoke from the patient perspective at a launch event on April 23rd organised by the Scientific and Technological Assessment Unit of the European Parliament [STOA].
EFNA ran an Advocate for Neurology Workshop in February 2013. This event was attended by over 70 representatives from national and European neurological patient organisations. The aim was to make connections and build resources in advance of EMOB.
At this event, EFNA asked participants to take a Key Messages Questionnaire. The results of this survey have been used to draft a pledge to protect neuroscience and neurology patients. It was launched during EMOB. See details of this and other EFNA events below…
European Parliament Events – May 7 and 8
On May 7, EFNA opened for signing by MEPs its ‘Putting Neurology Patients First: A pledge to support essential investment in neuroscience research and to protect the interests of neurology patients’.
20 MEPs signed on the day and pledged to support EFNA’s work in striving to implement the key asks. Photos from the day can be views in the Photo Gallery. EFNA will continue to build this support network during Year of the Brain 2014 and in advance of the EU Elections.
On May 8, EFNA Members held an Information Day in the Parliament to distribute leaflets on the various conditions and supports available to patients. Our base outside the main canteen ensured lots of passing traffic throughout the day and high visibility for both EFNA and our Member Groups. A number of MEPs dropped by the meet the Members, which included the European Multiple Sclerosis Platform, International Brain Tumour Alliance, Euro-Ataxia, Dystonia Europe, European Alliance for Restless Legs Syndrome and the European Huntington Disease Association. To build on this initiative, EFNA will invite our Members to exhibit at a Patient Corner to be organised at the World Congress of Neurology in Vienna, September 2013.
Conference Towards Active Patients’ Involvement in Healthcare – May 23
The European Patients’ Forum (EPF) celebrated its 10th Anniversary with a major conference in Dublin under the Irish EU Presidency and welcomed Commissioner Tonio Borg as a special guest. To mark European Month of the Brain, the Conference was organised jointly with EFNA and championed neurological disorders.
The need for a neurology strategy in all countries was one of the core issues emerging from the discussions. Effective partnerships are needed among patients’ organisations to tackle serious and long term conditions. Moreover people affected by brain disorders require equitable access to high quality, appropriate, care, treatment and support for full participation and inclusion in society.
“Brain disorders will affect 1 in 3 citizens and cost the EU economy almost €800 annually. So, this conference and its emphasis on the brain is timely in highlighting that all patients share similar concerns and illustrating the value of sharing expertise from within”, said Audrey Craven, President of EFNA.
“This Conference – marking 10 years of EPF – was a huge milestone. It reflected our strong bond with the Irish patient community and through working with EFNA and NAI, it demonstrated our commitment to solidarity and genuine partnership. It was a great springboard for concerted action, and EPF will take forward the recommendations of the meeting in close collaboration with our members and allies”, said EPF Executive Director Nicola Bedlington.
Healthy Brain: Healthy Europe – May 27/28
EFNA played a key role in this conference. As mentioned, our President served on the Scientifc Steering Committee for both this event and the earlier conference entitled: European Brain Research – Successes and Challenges, held in Brussels on May 14.
Encouragingly, the central role of patients and the need for active engagement with patient representatives were recurring themes across all sessions. Consensus was also reached on the need to incentivise brain research in Europe, to continue public-private partnership and to promote a personalised medicine approach.
John Golding, President of the European Multiple Sclerosis Platform and Pedro Montellano of GAMIAN Europe spoke from the patient perspective during the conference. In advance of the conference, both men – along with EFNA President, Audrey Craven – met with keynote speaker Patrick Kennedy (Member of the US Senate and Founder of OneMind4Research) to present the impact of living with a brain disoder.
The conclusions and recommendations of this conference are now available: CLICK HERE TO ACCESS
We will then work on implementing these during the upcoming Year of the Brain 2014.