EFNA E-NEWS: Issue 1 - January 2013

Dear Subscriber,

Firstly, we want to wish all of you a Happy 2013 and we look forward to continued partnership as the year progresses.

2013 will be an exciting year for EFNA (and neurology in Europe) - with the upcoming European Month of the Brain in May. Preparations are already being made to ensure that those affected by brain disorders are at the centre of this initiative. If you haven't already heard about our 'Advocate for Neurology' workshop taking place in February - scroll down to find out more.

EFNA will also be hosting two patient trainining courses in June and September as part of our Patient Training and Research Network at the London School of Economics. Find out more below on how you can get involved as either a participant or a sponsor.

Europe is also hosting the World Congress of Neurology in Vienna, September 2013 and EFNA is excited to be involved in the coordination of a number of sessions, as well as offering our Members the opportunity to exhibit at our planned 'Patient Corner' - more details will follow in future editions.

I would like to again stress that EFNA e-news is a platform for our Members and partners to showcase your news and events, so please do send any content that you would like included in upcoming editions to: executivedirector@efna.net

We also value your feedback and suggestions, so do keep in touch!

ADVOCATE FOR NEUROLOGY: FREE PATIENT WORKSHOP

As mentioned above, May 2013 has been designated by the European Commission as ‘European Month of the Brain’ [EMOB].

We, at the European Federation of Neurological Associations [EFNA], want to ensure that neurology patient groups across Europe are ready to take advantage of this Month. So, we invite you to take part in our two-day workshop aimed at giving you all the information you need to make your voice heard when May 2013 arrives.

Day 1 will introduce you to the concept of EMOB, with a presentation from Philippe Cupers of DG Research at the European Commission. Then it’s time for you to get involved by having your say on developing an advocacy strategy for neurology, and discovering how you can be a part of this exciting initiative.

Day 2 will focus on how we communicate our strategy/messages via the media (old and new) and political channels at a national and European level to reach key stakeholders, including policy makers.

There will also be presentations from top experts on the more practical aspects of running an awareness event/campaign – especially in these challenging times of limited resources. You can pick up top tips on how to:

Fundraise in a climate of austerity
Manage, engage and retain volunteers
Organise a successful event on a budget

Throughout there will be opportunities for networking with other active patient advocates so we can work towards collaborative events, sharing of resources, exchange of expertise, etc. And to finish our two-day workshop we will host MEP Nessa Childers of the Parliamentary Working Group on Mental Illness, Wellbeing and Brain Disorders for an interactive discussion forum.

And it’s all FREE! We will pay for the travel costs and accommodation of all delegates.

The event takes place on February 19th and 20th in the Marivaux Hotel, Brussels. If you are interested in attending, complete the Registration Form (available below) and email to: executivedirector@efna.net as soon as possible. Registration will close as soon as the maximum number of participants is reached.

Download the agenda and registration form by CLICKING HERE

Check out our new and improved website at: WWW.EFNA.NET

EFNA Members: CONSULTATION

In 2012, EFNA became an Associate Member of the European Patients Forum [EPF].

EPF engages with its Members before it sets its position/policy on all topics. EFNA will also seek feedback from our Membership before responding to any EPF (or other) consultation process. We will then collate our Members' Views (if any) and prepare a reponse to EPF. To enable this process EFNA has added a 'Consultation' section to the Members Area on our new website.

EFNA Member's can use their unique username and password to log onto the site and read and/or respond to EPF documents (or papers from other relevant organisations) using the submission form.

Currently, there are papers open on:
- Clinical Trials
- Medical Devices
- Rights and Needs of Older Patients

If you require any assistance in using the website or submission form, please get in touch.

Industry Partners: INVITATION

The London School of Economics and EFNA have worked together for three years to deliver training to patient groups on health technology assessment (HTA). Over this period, seven training courses have been developed and delivered. The decision has now been taken to expand the training available to patient groups through this partnership and to incorporate the HTA Patient Academy into the new, broader Patient Training and Research Network.

It is planned (provisionally) that the training topics for Year 2 will focus on Pricing, Access and Reimbursement, with specific emphasis on how the patient can influence the regulatory decision-making process. The courses will run in June and September 2013. Keep an eye on the website and newsletter for details.

An independent steering committee will be convened in early 2013 to oversee the activities of the project for Years 2 and 3 – including the choosing of topics/issues for training courses and research.

We are ongoingly seeking sponsorship for this project and all funders will be invited to an annual meeting where they can suggest potential topics for research/training and be appraised on the progress of the network.

The first meeting takes place in London on January 28^th. Industry representatives interested in attending who have not already registered, please contact: executivedirector@efna.net for more details.

ALLIANCE FOR MRI: UPDATE

After almost 10 years of uncertainty, the EU Employment and Social Affairs Committee (EMPL) has taken the first steps towards ensuring continued patient access to MRI by endorsing the MRI derogation in its adoption of a draft report on the revised Directive 2004/40/EC on electromagnetic fields.

However, there was some opposition from the Socialist Group who sought to insert an article introducing a general principle that workers should not be exposed to EMF above certain exposure limits. However, this amendment was not accepted by the Rapporteur given the extended discussions on the text to date. There now remains an outstanding threat to the Parliament’s adoption of the text, as the Socialist Shadow Rapporteur , Ms Rapti, has announced that the Socialist Group will abstain in the plenary should this proposed amendment not be accepted.

Informal discussions are now ongoing between the European Parliament, Council and the European Commission. The aim of all institutions remains to agree on a final text in order to reach a First Reading Agreement in 2013.

The date for the plenary vote is likely to be either March or April 2013. In advance, the Alliance for MRI is asking all stakeholder groups to contact their MEPs, notably those of the Socialist Group, in order to communicate the urgency in adopting the revised Directive.

The Alliance for MRI can provide expert witnesses, template letters and information on MRI use in specific disease areas.

In next edition: European Month of the Brain 2013 - Calendar of Events

EPF Seminar on eHealth
When? 23 January 2012
Where? Hotel Bloom – Brussels
More information: CLICK HERE

Closing Conference: Chain Of Trust Project
When? 24 January 2013
Where? Hotel Bloom – Brussels
More information: CLICK HERE

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