EFNA e-News: Issue 3

EFNA E-NEWS: Issue 3 - June 2013

Dear Subscriber,

Welcome to Issue 3 of EFNA e-News. It's been a hectic couple of months since our last edition. May 2013 had been designated as European Month of the Brain [EMOB] by the European Commission and EFNA played a central role in the roll-out of the Month.

Below, we give an overview of the keynote events from the patient perspective - and include some photos of a very successful Month. Further photos can be viewed on our Flickr Page - CLICK HERE

There has been no respite since May with plans continuing apace for our upcoming course on Pricing, Access and Reimbursement for patient advocates at the London School of Economics this June. Plans are also being put in place for EFNA involvement at the World Congress of Neurology which we hope will result in a bigger involvement than ever before for neurology patient groups at a scientific congress.

We hope you enjoy this edition. If you've any queries, questions or suggestions please email: executivedirector@efna.net

European Parliament Events - May 7 and 8

On May 7, EFNA opened for signing by MEPs its â€˜Putting Neurology Patients First: A pledge to support essential investment in neuroscience research and to protect the interests of neurology patientsâ€™.

20 MEPs signed on the day and pledged to support EFNAâ€™s work in striving to implement the key asks - a small number are pictured above. Other photos can be viewed on our Flickr Page.

EFNA will continue to build this support network during Year of the Brain 2014 and in advance of the EU Elections. We are also working to make it available for signing online and will be asking for your support in the coming months.

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.

World Congress of Neurology 2013
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 [WCN] in Vienna, September 2013.

The 'Patient Corner' will take over 18 square metres of the Exhibition Centre and will involve EFNA and our Member Groups distributing information and hosting a number of mini-events.

WCN will also see a joint EFNA/EFNS Session entitled 'Making the Case for Neurology' which will explore approaches to advocacy internationally and the annual EFNA General Assembly. We also hope to see our patient representatives sit on the Scientific Committees for the first time.

EFNA partners with the European Patients Forum to mark EMOB - May 23

The European Patientsâ€™ 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 patientsâ€™ 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.

â€œBrain disorders will affect 1 in 3 citizens and cost the EU economy almost â‚¬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 withinâ€, said Audrey Craven, President of EFNA.

â€œThe conclusions of this conference taken from the patient perspective, will be taken forward and incorporated into the high-level EU/IE Presidency Conference â€˜Healthy Brain: Healthy Europeâ€™."

EPF Executive Director Nicola Bedlington said, â€œThis Conference â€“ marking 10 years of EPF â€“ 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."

Healthy Brain: Healthy Europe - May 27/28

EFNA played a key role in this conference - attended by high level representatives of the key stakeholder groupings in the field of brain disorders such as policy, industry, medical/research, patients, etc.

Our President, Audrey Craven served on the Scientifc Steering Committee for both this event and the earlier conference entitled: European Brain Research â€“ 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. Mr Montellano used his speaking slot to present the conclusions and recommendations from the European Patients Forum/EFNA conference.

In advance of the conference, both men â€“ along with EFNA President, Audrey Craven â€“ 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 will be made available by EFNA once finalised. We will then work on implementing these during the upcoming Year of the Brain 2014.

EFNA HOSTS WORKSHOP FOR PATIENT ADVOCATES AT THE LONDON SCHOOL OF ECONOMICS ON PHARMACEUTICAL PRICING, ACCESS AND REIMBURSEMENT

Thirty patient advocates from across Europe and across disease area, will meet in London next week to participate in the EFNA/LSE workshop on Pharmaceutical Pricing, Access and Reimbursement at the London School of Economics.

This important initiative is aimed at equipping participants with the knowledge and skills they need to be actively involved in influencing regulatory decision-making in relation to medical technologies/pharmaceuticals.

By attending this course, participants will obtain insights on: (a) how pharmaceuticals fit within the overall health care system; (b) how different countries in Europe and beyond pay for pharmaceuticals; (c) what are the most salient regulations addressing coverage/access and how these affect patient access; (d) how stakeholders - including patients - participate in the decision-making process.

Although the June course is now fully subscribed, there are some places still available for those interested in participating in the next course from September 16-17 in London.

The intensive programme will start at 09.00hrs on the first day and finish at 17.30hrs on Day 2. Costs of the course (including standard class travel (up to Â£300), accommodation and meals) will be covered by EFNA. Your contribution is your time and effort.

Criteria for Participants: Participants should have a conceptual understanding of the regulatory process for new medicines/medical technologies. The course content, which is advanced, is suitable only for participants who are already engaging with regulators, payers and decision makers at either a National and/or European level, and/or those who are actively involved in the shaping of policy within their organisation. Participants must also be fluent in English - allowing them to comprehend the regulatory terminology used throughout the workshop and contribute to the debate/discussion arising.

The number of participants is limited to 30 to ensure that there is ample opportunity for interaction. All participants will leave the course with a certificate from the LSE, so email executivedirector@efna.net and:

SECURE YOUR FREE PLACE TODAY!

UPDATE FROM THE ALLIANCE ON MRI

The Alliance for MRI welcomes the European Parliament's approval of a derogation for Magnetic Resonance Imaging (MRI) in its draft report on the revised Directive on Protecting Workers from Exposure to Electromagnetic Fields.

The approval of this derogation is in line with the first reading political agreement reached by Council and Parliament in April this year, following in-depth informal discussions after the Committee vote in December 2012.

"Today's approval by the Plenary marks a milestone towards revising an erroneous European directive before it enters into force. In its old form, the Directive would have prevented patients from benefiting from MRI used in the diagnosis and treatment of their life-threatening diseases" remarked Professor Gabriel Krestin, former President of the European Society of Radiology.

The derogation for MRI is vital, as the revised exposure limits for workers in the proposed Directive would have prohibited the use of MRI in areas such as MRI-guided surgery (for example brain surgery) and in imaging vulnerable patients and children, where closer patient contact is required. New research and developments in MRI would have also been severely restricted, as would routine cleaning and maintenance of MRI equipment.

Mary Baker, President of the European Brain Council said: "The derogation for Magnetic Resonance Imaging that was endorsed by the Parliament today will ensure that serious brain conditions such as Parkinson's or Alzheimer's will be diagnosed and treated to the benefit of patients in Europe. I am grateful that Members of the European Parliament have followed our arguments, enabling patient access to MRI whilst fully respecting the safety needs of health professionals working with the equipment. I now hope for a speedy adoption of the revised Directive by Member States."

Following today's Plenary vote, the Council is expected to adopt its official position, in line with the First Reading Agreement from April, as soon as possible.

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