MEP Interest Group on Brain Health and Neurological Conditions

MEP Interest Group on Brain Health and Neurological Conditions

MEP Interest Group on Brain, Mind and Pain

An initiative of the European Federation of Neurological Associations

The Interest Group on Brain Health and Neurological Conditions is focused on the following thematic areas:

Eradicate stigma, isolation and discrimination:

A lack of public awareness of BMP (Brain, Mind and Pain) disorders feeds their stigma and the associated isolation and discrimination suffered by BMP patients, carers, and their families

Ensure equitable access to treatment, services, and support:

Access to treatment, services and support is a topic of concern for patients in Europe due to high failure rates, delays in market access, relatively expensive treatments, and inequality in access across, but also within, EU Member States

Promote patient empowerment for increased engagement:

Patient empowerment is a means for more effective BMP patient engagement and meaningful involvement in the research, medical and policy conversations which affect them

Background to the MEP Interest Group on Brain Health and Neurological Conditions

The MEP Interest Group on Brain, Mind and Pain was launched in 2015 as an initiative of the European Federation of Neurological Associations (EFNA) and Pain Alliance Europe (PAE). Between 2015 – 2022, nearly 20 events were held, putting the Interest Group’s priorities on the EU agenda. Many other initiatives were conducted such as the Book of Evidence, surveys, policy recommendations, EP written questions etc.

The MEP Interest Group on Brain Health and Neurological Conditions – a continuation of the earlier Interest Group – is an initiative of the European Federation of Neurological Associations (EFNA), who will provide secretariat to the Group.

The MEP Interest Group aims to raise political awareness of the impact of neurological conditions in Europe. It encourages patient-centric policy solutions aiming to prioritise these disorders, decrease stigma, increase access to treatment, encourage research, promote patient empowerment, and improve quality of life overall. As an initiative led by a patient organisation, the Interest Group’s work and recommendations aim to ensure that its policy solutions align with patients’ preferences and that their meaningful involvement is enshrined and supported in all arising policy actions.

Brain health is an evolving concept, attracting increasing attention not only from the health sector but also from wider society. The brain and central nervous system are the command centre of the human body, controlling both conscious and unconscious body functions and thereby influencing every aspect of life. If our brains are challenged by disease or other factors, this poses significant risks not only to an individual’s overall health and well-being, but also to global development.

Neurological conditions affect the central and/or peripheral nervous system and include neuro-degenerative disorders like Alzheimer’s and Parkinson’s disease, cerebrovascular diseases including stroke, neuroinfectious/neuro-immunological disorders such as multiple sclerosis, neurodevelopmental disorders such as autism, along with traumatic brain and spinal cord injuries. They also encompass well known diseases such as migraine and epilepsy, as well as many rare and neglected diseases.

Neurological conditions tend to be chronic, life-long conditions. As such, they require coordinated, multidisciplinary, integrated management and rehabilitation; delivered through a stepped model of care. Across the neurological disorders there is a major lack of awareness – many are neglected and, even, contested. This leads to stigma, discrimination and limited access to treatment, services and supports.

It is estimated that 1 in 3 people will develop a neurological condition at some point in their life, making them the leading cause of disability-adjusted life years (DALYs) and the 2nd leading cause of death globally. In Europe, they are the 3rd leading cause of death and DALYs.

The cost of neurological conditions in Europe is €336 billion annually – and growing.

Due to their immense burden, neurological and mental health conditions were added to the list of priority non-communicable diseases (NCDs) by the United Nations General Assembly in 2018.

With the NCD Initiative and the Global action plan set in motion, 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 brain health and neurological conditions, improving survival rates, reducing complications and disability, lowering treatment costs and – ultimately – ensuring a better quality of life for all those affected.

To drive this agenda forward, the MEP Interest Group on Brain Health and Neurological Conditions will provide an advocacy platform for stakeholders from across the brain health and neurology communities, with the patient voice at its core.

Dear Members of the European Parliament,

Please register your support for the MEP Interest Group on Brain, Mind and Pain by digitally signing here.

You might also consider downloading the PDF version of our signature card to print, sign and share in a photograph on social media! Tag us on Twitter at @EUneurology, or send an email with your image to advocacy[at]efna.net, and we will share this on your behalf.

The MEP Interest Group on Brain Health and Neurological Conditions is currently co-chaired by:

register now

  • Jeroen Lenaers
  • Tilly Metz
  • Jaroslaw Duda
  • Katarina Konecná
  • Sirpa Pietikäinen
  • Alex Agius Saliba

Register of Supporters for the 2019-2024 mandate:

Past Events

The below events took place during the current Parliamentary term, under the Interest Group’s former title, the MEP Interest Group on Brain, Mind and Pain:

 

ARCHIVE
Publications of the former MEP Interest Group on Brain, Mind and Pain:

The Book of Evidence – download here

The Book of Evidence (BoE) is a key policy document focusing on Brain, Mind and Pain (BMP) disorders. It is a highly valuable and important document, which points to the urgent need for more focus on the many issues surrounding BMP disorders.  It is a must read for policy makers, patient groups, and the broader stakeholder community alike.

Appendices

Concept notes

  • The impact of Brain, Mind and Pain disorders on Women’s Health and Well-being – download here
  • The Socioeconomic impact on those living with Brain, Mind and Pain disorders – download here

 

MEP Pledge for Brain Health and Neurological Conditions, 2024-2029

In recognition of the critical need to address the challenges posed by neurological conditions in the European Union, I hereby pledge to:

  1. Prioritise neurological health: Champion neurological conditions as a top health priority within the EU, advocating for increased research funding and equitable access to innovative treatments.
  2. Support patient-centred policies: Ensure the active involvement of neurological patients and their carers in healthcare decision-making, emphasising the development of policies that directly improve patient care and quality of life.
  3. Join the MEP Interest Group on Brain Health and Neurological Conditions: Commit to being an active member of this group, working collaboratively to prioritise neurological conditions and brain health within the EU legislative framework.

By signing this pledge, I commit to actively supporting initiatives that advance neurological health, research, and patient care throughout my term in the European Parliament.

The MEP Interest Group on Brain Health and Neurological Conditions is supported by: