Europe: European Federation of Neurological Associations (EFNA)

From an email.


In 2016, the European Federation of Neurological Associations (EFNA) launched its Training Initiatives for Neurology Advocates [TINA]. As part of the initiative, training and capacity building meetings have been held annually at both pan-European and National level.

Current restrictions due to the Covid-19 pandemic make EFNA’s training and capacity building meetings difficult to organise face to face in the short term. However, the pandemic has shown us that virtual solutions can be not only effective but also more inclusive – allowing the participation of patient advocates who cannot easily travel to events. The pandemic has also accelerated the need to add capacity to patient organisations in terms of their skills in the online space.

For these reasons, EFNA has developed a pilot series of e-learning modules linked to our advocacy activities, available free of charge to the public. Three modules have been released to date:

• EU Advocacy for the Brain, Mind and Pain Community
• Making the most of your virtual meetings
• e-Advocacy: Developing a Social Media Strategy

Also on their website at https://www.efna.net/elearning/

 

Who can become advocates? Is it for clinicians only?

 

No restrictions. Just create a free account and away you go. It's not signing up to become an advocate for them, it's taking the courses on advocacy which are presented from their (I assume) perspective. I thought the general topics that they cover could be useful to any of us who are interested in this sort of thing.

 

D'oh! I see! Still very useful. And a good use of time for those of us (most of us?) with lots of it.

 

From an email.

International neurological organisations and regional umbrellas are teaming up to make neurology a global public health priority.

The OneNeurology Initiative aims to unite and strengthen neurology-related groups to stimulate collaborative advocacy, action and accountability for the prevention, treatment and management of neurological disorders worldwide.

The European Federation of Neurological Associations [EFNA], together with the European Academy of Neurology [EAN], founded this patient-driven initiative, which includes a multi-stakeholder global partnership.

Soaring figures highlight why it is time to act now: Neurological disorders have the highest prevalence, biggest disability and the greatest cost among non-communicable diseases (NCDs). They are also the fastest-growing cause of deaths among NCDs.

Joke Jaarsma, EFNA President, explains:

“From advocacy, to capacity-building, to awareness raising – we want to demonstrate what makes all neurological disorders one and what’s in it for the community and wider society if they are all addressed together, aligned to disease-specific advocacy activities.”
The Partnership acts as an amplifier by creating the favourable policy environment for disease-specific efforts and a tailored approach to patient care at all levels.

There are more than 400 recognised neurological disorders. This includes degenerative diseases like Alzheimer’s and Parkinson’s, cerebrovascular diseases like stroke and well-known conditions such as migraine, epilepsy and multiple sclerosis. Neurology also encompasses many rare, neglected and even contested diseases.

Despite the differences, there are many common challenges and solutions that can be addressed with an integrated response.

Prof. Claudio Bassetti, EAN President, explains why the organisation sees this initiative as important:

“Current preventive measures such as diet, exercise and sleep have often favorable effects on several neurological disorders like stroke and dementia, and the care of chronic neurological disorders face similar challenges and opportunities, independent from the specific underlying etiology.”

The launch of the Partnership is timely, since the World Health Organisation has opened a consultation on a 10 year intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (GAP), to be adopted by the World Health Assembly in May 2022 and consequently implemented at country level.

The Partnership will focus on contributing to the drafting, adoption and implementation of the GAP by countries worldwide. Joke concludes:

“We need a comprehensive and integrated response for neurology in which every stakeholder has its role to play and in which lives are saved. We will support disease specific advocacy whilst also working together on common challenges such as prevention, timely diagnosis, stigma, access, neurological workforce, research and the quality of life of those affected and their carers.”

You can find out more about the OneNeurology Initiative and its partners at www.oneneurology.net.

 

https://twitter.com/user/status/1447934814926016513

 

From an EFNA email.

New e-learning series on EU Funding
As part of EFNA’s Training Initiatives for Neurology Advocates [TINA] programme, a new series of e-learning modules is launched today, on the theme of EU Funding.

The EU provides funding for a broad range of projects and programmes covering almost all areas. Navigating all these programmes and applying for funding can be quite a daunting process! Therefore, in this series of modules, we'll take you step by step and provide you with the information you need, with modules covering:

• The Recovery Plan for Europe
• Horizon Europe
• EU4Health
• Erasmus+ and
• The EU Cohesion Policy

EFNA’s e-learning modules are free to access, though registration is required. Participants will be able to access personalised certificates of completion following each module.

Learn more and register at: www.efna.net/elearning


@Michiel Tack , if I remember right you recently wrote something to try to make it easier for ME researchers to apply for EU funding, so perhaps these would be of use as well?

 

Thanks for highlighting this, will have a look.

 

Neurological Disorders Become A Major Global Health Priority With Adoption Of Global Action Plan

"Supporting the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders and calling for its close alignment with the EU NCD Initiative “Healthier Together”

The European Federation of Neurological Associations – EFNA, along with members of the OneNeurology partnership which EFNA co-founded, celebrates a major milestone for all those affected by neurological disorders today, with the adoption of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (GAP) at this week’s 75th World Health Assembly.

We fully endorse its aims, will support its implementation in Europe, and celebrate the positive impact it should have for those living with neurological disorders, their carers, the medical professionals who support them, and those researching scientific breakthroughs in prevention, diagnosis and treatment.

We call for a close alignment of the GAP with the EU NCD Initiative ‘Healthier Together’, expected to be adopted in June 2022. A conjunction of the NCD Initiative and the GAP couldn’t be timelier. The European community is now presented with a unique window of opportunity to provide an integrated and cross-sectorial response to neurological health. Investing in this holistic model can bring measurable health and economic gains to European countries. This includes decreasing the incidence of neurological disorders, improving survival rates, reducing complications and disability, lowering treatment costs and – ultimately – ensuring a better quality of life for all those affected."

https://www.efna.net/gap-adoption/

 

"On November 12, 2024, the first post-election meeting of the MEP Interest Group on Brain Health and Neurological Conditions took place, hosted by Co-Chair MEP Romana Jerković ( S&D, Croatia) at the European Parliament, Brussels.

Entitled ‘Invisible Issues: Bridging the gap between the perception of neurological conditions and their true impact’, the event’s main objective was to discuss the challenges of living with a neurological condition, the impact this has on the individuals and families affected, the impact on education and employment and to highlight where we need to do better in policy development and implementation. The event was attended by EU policymakers, healthcare professionals, representatives of patient organisations, researchers, patients and caregivers. From the weight of stigma and discrimination to the significant socioeconomic burdens, this meeting was dedicated to understanding and addressing these issues."


"Gracemarie Bricalli, President, European Myalgic Encephalomyelitis Alliance (EMEA), who spoke to us about ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome). Gracemarie highlighted how the name is misleading and contributes to the stigma that people with ME are lazy, liars, that the condition does not really exist or that it is psychosomatic. These myths are not aided by the fact that to date no biomarkers are known. Yet ME has been recognised by the WHO since 1969. In Europe the EU Commission reported that there are 2 million known cases, however, this estimated to be only 10% of the total number of actual cases.

People living with ME can often be intolerant to light, sound, smell and human touch, can be affected by weakness and brain fog. In more severe cases, people with ME cannot talk and must be tube fed. Through not taking this condition seriously people living with ME have their human rights violated, the universal health coverage package is not meaningful and their disabilities are not recognised. With stigma, discrimination, isolation, the unpredictability of the condition and the absence of treatment options, many consider suicide. The EMEA call for the implementation of the 2020 EU resolution on ME."

https://www.efna.net/meeting-report-mep-interest-group-on-brain-health-and-neurological-conditions/