The European Federation of Neurological Associations (EFNA)
@efna.net
The European Federation of Neurological Associations [EFNA] is a non-governmental organisation (NGO) that brings together 21 pan-European neurology patient groups.
Our slogan ‘Empowering Patient Neurology Groups’ encapsulates our goals as an association.
Our slogan ‘Empowering Patient Neurology Groups’ encapsulates our goals as an association.
Reposted by The European Federation of Neurological Associations (EFNA)
#WorldBrainDay in coming up on July 22 - how can we improve the health care system for rare neurological diseases? We asked our network what they would choose if they could chnge only one thing. This is what Iva Galovic from our partner org. @efna.net would choose:
www.youtube.com/watch?v=vAlr...
www.youtube.com/watch?v=vAlr...
Improving the health care system for RND - Iva Galovic (EFNA, patient organization)
YouTube video by ERN-RND
www.youtube.com
July 7, 2025 at 11:31 AM
#WorldBrainDay in coming up on July 22 - how can we improve the health care system for rare neurological diseases? We asked our network what they would choose if they could chnge only one thing. This is what Iva Galovic from our partner org. @efna.net would choose:
www.youtube.com/watch?v=vAlr...
www.youtube.com/watch?v=vAlr...
Reposted by The European Federation of Neurological Associations (EFNA)
Our Chair @jgjanegreenmbe.bsky.social was invited to talk by @efna.net at the recent @ean.org congress in Helsinki (EAN TV) an important and truly inclusive event hosted by the EAN.
Watch the full video ‘EFNA: Health Literacy for Ethical Clinical Outcomes’on our YouTube youtu.be/FpGbEjkArp8?...
Watch the full video ‘EFNA: Health Literacy for Ethical Clinical Outcomes’on our YouTube youtu.be/FpGbEjkArp8?...
July 18, 2025 at 1:34 PM
Our Chair @jgjanegreenmbe.bsky.social was invited to talk by @efna.net at the recent @ean.org congress in Helsinki (EAN TV) an important and truly inclusive event hosted by the EAN.
Watch the full video ‘EFNA: Health Literacy for Ethical Clinical Outcomes’on our YouTube youtu.be/FpGbEjkArp8?...
Watch the full video ‘EFNA: Health Literacy for Ethical Clinical Outcomes’on our YouTube youtu.be/FpGbEjkArp8?...
Reposted by The European Federation of Neurological Associations (EFNA)
According to a recent survey, 71% of people with a #neurologicalcondition have had to adjust their role or work schedule because of their condition, of which only 35% report that their employer was accommodating of this change. #BrainAwarenessWeek #BAW2025 #invisibleillness #neurology @efna.net
March 16, 2025 at 7:38 AM
According to a recent survey, 71% of people with a #neurologicalcondition have had to adjust their role or work schedule because of their condition, of which only 35% report that their employer was accommodating of this change. #BrainAwarenessWeek #BAW2025 #invisibleillness #neurology @efna.net
Reposted by The European Federation of Neurological Associations (EFNA)
Over 860,000 Irish people are living with a #neurological condition with 50,000 newly diagnosed
each year.
Educate yourself, listen to people & join the campaigns of your local brain health organisations. Our #brain_health needs you ❤️🧠☘️
#speirgorm #spéirghorm #MS @emspofficial.bsky.social
each year.
Educate yourself, listen to people & join the campaigns of your local brain health organisations. Our #brain_health needs you ❤️🧠☘️
#speirgorm #spéirghorm #MS @emspofficial.bsky.social
35% of people with neurological conditions are made to feel that having that condition is their own fault. This shows a very poor level of understanding among the public which must be addressed through awareness campaigns and improved education.
www.efna.net/invisible-is...
#BrainAwarenessWeek
www.efna.net/invisible-is...
#BrainAwarenessWeek
April 1, 2025 at 2:39 PM
Over 860,000 Irish people are living with a #neurological condition with 50,000 newly diagnosed
each year.
Educate yourself, listen to people & join the campaigns of your local brain health organisations. Our #brain_health needs you ❤️🧠☘️
#speirgorm #spéirghorm #MS @emspofficial.bsky.social
each year.
Educate yourself, listen to people & join the campaigns of your local brain health organisations. Our #brain_health needs you ❤️🧠☘️
#speirgorm #spéirghorm #MS @emspofficial.bsky.social
A great day yesterday here in Brussels where EFNA's members came from across Europe to join our 2025 General Assembly. We took a look back at our 2024 activities and took some time to develop exciting plans for the years to come.
#StrongerConnected #neurology #healthliteracy #BrainHealth
#StrongerConnected #neurology #healthliteracy #BrainHealth
April 9, 2025 at 10:15 AM
A great day yesterday here in Brussels where EFNA's members came from across Europe to join our 2025 General Assembly. We took a look back at our 2024 activities and took some time to develop exciting plans for the years to come.
#StrongerConnected #neurology #healthliteracy #BrainHealth
#StrongerConnected #neurology #healthliteracy #BrainHealth
EFNA's 2025 #StrongerConnected workshop is taking place in Brussels today, where representatives of our member organisations, our Community Advisory Board, patient and caregiver advocates, and industry partners have gathered to discuss the topic of #healthliteracy.
April 9, 2025 at 10:14 AM
EFNA's 2025 #StrongerConnected workshop is taking place in Brussels today, where representatives of our member organisations, our Community Advisory Board, patient and caregiver advocates, and industry partners have gathered to discuss the topic of #healthliteracy.
35% of people with neurological conditions are made to feel that having that condition is their own fault. This shows a very poor level of understanding among the public which must be addressed through awareness campaigns and improved education.
www.efna.net/invisible-is...
#BrainAwarenessWeek
www.efna.net/invisible-is...
#BrainAwarenessWeek
March 13, 2025 at 12:51 PM
35% of people with neurological conditions are made to feel that having that condition is their own fault. This shows a very poor level of understanding among the public which must be addressed through awareness campaigns and improved education.
www.efna.net/invisible-is...
#BrainAwarenessWeek
www.efna.net/invisible-is...
#BrainAwarenessWeek
The top 3 areas where people affected by neurological conditions experience #stigma are:
1️⃣ interaction with medical professionals (46%) 👩⚕️
2️⃣ in employment (19%) 🏢
3️⃣ interaction with the public (11%) 🧑🤝🧑
Read the results of our survey at www.efna.net/invisible-is...
#BrainAwarenessWeek
1️⃣ interaction with medical professionals (46%) 👩⚕️
2️⃣ in employment (19%) 🏢
3️⃣ interaction with the public (11%) 🧑🤝🧑
Read the results of our survey at www.efna.net/invisible-is...
#BrainAwarenessWeek
March 13, 2025 at 12:49 PM
The top 3 areas where people affected by neurological conditions experience #stigma are:
1️⃣ interaction with medical professionals (46%) 👩⚕️
2️⃣ in employment (19%) 🏢
3️⃣ interaction with the public (11%) 🧑🤝🧑
Read the results of our survey at www.efna.net/invisible-is...
#BrainAwarenessWeek
1️⃣ interaction with medical professionals (46%) 👩⚕️
2️⃣ in employment (19%) 🏢
3️⃣ interaction with the public (11%) 🧑🤝🧑
Read the results of our survey at www.efna.net/invisible-is...
#BrainAwarenessWeek
According to our recent survey of people with neurological conditions, 84% of people indicate they experience #stigma as a direct result of their condition.
Read the complete survey results now at www.efna.net/invisible-is...
#BrainAwarenessWeek #BAW2025 #invisibleillness #neurology
Read the complete survey results now at www.efna.net/invisible-is...
#BrainAwarenessWeek #BAW2025 #invisibleillness #neurology
March 13, 2025 at 12:48 PM
According to our recent survey of people with neurological conditions, 84% of people indicate they experience #stigma as a direct result of their condition.
Read the complete survey results now at www.efna.net/invisible-is...
#BrainAwarenessWeek #BAW2025 #invisibleillness #neurology
Read the complete survey results now at www.efna.net/invisible-is...
#BrainAwarenessWeek #BAW2025 #invisibleillness #neurology
Yesterday's edition of The Guardian featured an article on #HealthLiteracy by EFNA's Executive Director, Orla Galvin which explains how good health literacy empowers patients and clinicians.
Read it now at: www.healthawareness.co.uk/neurology/he...
#NeurologicalConditions2025 #BrainAwarenessWeek
Read it now at: www.healthawareness.co.uk/neurology/he...
#NeurologicalConditions2025 #BrainAwarenessWeek
March 13, 2025 at 12:39 PM
Yesterday's edition of The Guardian featured an article on #HealthLiteracy by EFNA's Executive Director, Orla Galvin which explains how good health literacy empowers patients and clinicians.
Read it now at: www.healthawareness.co.uk/neurology/he...
#NeurologicalConditions2025 #BrainAwarenessWeek
Read it now at: www.healthawareness.co.uk/neurology/he...
#NeurologicalConditions2025 #BrainAwarenessWeek
Reposted by The European Federation of Neurological Associations (EFNA)
Shocking @efna.net study: 84% with neurological conditions face stigma, HALF from medical professionals.
EMSP is advocating for:
Enhanced care access
Workplace inclusion
Evidence-based progress
Our IMSS survey provides first standardised patient evidence across Europe.
Learn more: bit.ly/4bo3iX2
EMSP is advocating for:
Enhanced care access
Workplace inclusion
Evidence-based progress
Our IMSS survey provides first standardised patient evidence across Europe.
Learn more: bit.ly/4bo3iX2
Impact of Multiple Sclerosis Symptoms (IMSS) - EMSP
Assessing the Impact of Multiple Sclerosis Symptoms (IMSS) on the quality of life of people with MS to provide personalised care and support
bit.ly
March 4, 2025 at 9:37 AM
Shocking @efna.net study: 84% with neurological conditions face stigma, HALF from medical professionals.
EMSP is advocating for:
Enhanced care access
Workplace inclusion
Evidence-based progress
Our IMSS survey provides first standardised patient evidence across Europe.
Learn more: bit.ly/4bo3iX2
EMSP is advocating for:
Enhanced care access
Workplace inclusion
Evidence-based progress
Our IMSS survey provides first standardised patient evidence across Europe.
Learn more: bit.ly/4bo3iX2
We conducted a comprehensive survey to uncover the invisible issues faced by the #neurology patient community- issues that remain largely unrecognised by the general public, policymakers, and health system leaders.
Read the results now: www.efna.net/invisible-is...
#RareDiseaseDay
Read the results now: www.efna.net/invisible-is...
#RareDiseaseDay
February 27, 2025 at 5:08 PM
We conducted a comprehensive survey to uncover the invisible issues faced by the #neurology patient community- issues that remain largely unrecognised by the general public, policymakers, and health system leaders.
Read the results now: www.efna.net/invisible-is...
#RareDiseaseDay
Read the results now: www.efna.net/invisible-is...
#RareDiseaseDay
Missed last week's meeting of the MEP Interest Group on Brain Health & Neurological Conditions? No problem, you can watch a reply of the event on our YouTube Channel now: youtu.be/1Zr0zm8ILO0?...
#RareDiseaseDay #RareNeurology
#RareDiseaseDay #RareNeurology
Shaping the Future: Policy Responses to Rare Neurological Challenges
YouTube video by European Federation of Neurological Associations
youtu.be
February 27, 2025 at 4:56 PM
Missed last week's meeting of the MEP Interest Group on Brain Health & Neurological Conditions? No problem, you can watch a reply of the event on our YouTube Channel now: youtu.be/1Zr0zm8ILO0?...
#RareDiseaseDay #RareNeurology
#RareDiseaseDay #RareNeurology
Tomorrow is #RareDiseaseDay & we'll be marking the day by sharing some facts about the impact of rare neurological conditions. You can get involved by sharing your story with the #rarediseaseday and #rareneurology hashtags. You'll find lots of resources at www.rarediseaseday.org/downloads/
February 27, 2025 at 3:50 PM
Tomorrow is #RareDiseaseDay & we'll be marking the day by sharing some facts about the impact of rare neurological conditions. You can get involved by sharing your story with the #rarediseaseday and #rareneurology hashtags. You'll find lots of resources at www.rarediseaseday.org/downloads/
Reposted by The European Federation of Neurological Associations (EFNA)
Delighted to be a CAB member for @efna.net and help advocate for all neurological conditions🙏🏽
@parkinsonseurope.bsky.social @parkinsons.org.uk
www.efna.net/about-us/cab/
@parkinsonseurope.bsky.social @parkinsons.org.uk
www.efna.net/about-us/cab/
February 20, 2025 at 1:52 PM
Delighted to be a CAB member for @efna.net and help advocate for all neurological conditions🙏🏽
@parkinsonseurope.bsky.social @parkinsons.org.uk
www.efna.net/about-us/cab/
@parkinsonseurope.bsky.social @parkinsons.org.uk
www.efna.net/about-us/cab/
Reposted by The European Federation of Neurological Associations (EFNA)
The International Headache Society has submitted applications for the addition of drugs for #migraine #clusterheadache to the @who.int Essential Medicines List (EML). Public comment is open now.
www.who.int/groups/exper...
www.who.int/groups/exper...
February 27, 2025 at 9:52 AM
The International Headache Society has submitted applications for the addition of drugs for #migraine #clusterheadache to the @who.int Essential Medicines List (EML). Public comment is open now.
www.who.int/groups/exper...
www.who.int/groups/exper...
Reposted by The European Federation of Neurological Associations (EFNA)
With our coordinator Holm Graessner as panelist! Register now for online participation.
Join us on 19 February for a meeting of the MEP Interest Group on Brain Health & Neurological Conditions, 'Shaping the Future: Policy Responses to Rare Neurological Challenges' at the EU Parliament and online.
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
February 4, 2025 at 7:42 AM
With our coordinator Holm Graessner as panelist! Register now for online participation.
On Feb 4, EFNA will host a workshop entitled 'Engaging in advocacy at EU level and the benefits that can bring nationally' which aims to improve awareness of our MEP Interest Group and encourage engagement.
If you would like to attend, please register here: forms.gle/5ZqGBvyQabWE...
#neurology
If you would like to attend, please register here: forms.gle/5ZqGBvyQabWE...
#neurology
REGISTRATION
This virtual event will take place on Tuesday, February 4th, 2025.
A link to the workshop will be shared with you in advance.
Please note: This meeting will take place in English
forms.gle
January 30, 2025 at 2:57 PM
On Feb 4, EFNA will host a workshop entitled 'Engaging in advocacy at EU level and the benefits that can bring nationally' which aims to improve awareness of our MEP Interest Group and encourage engagement.
If you would like to attend, please register here: forms.gle/5ZqGBvyQabWE...
#neurology
If you would like to attend, please register here: forms.gle/5ZqGBvyQabWE...
#neurology
Join us on 19 February for a meeting of the MEP Interest Group on Brain Health & Neurological Conditions, 'Shaping the Future: Policy Responses to Rare Neurological Challenges' at the EU Parliament and online.
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
January 30, 2025 at 2:53 PM
Join us on 19 February for a meeting of the MEP Interest Group on Brain Health & Neurological Conditions, 'Shaping the Future: Policy Responses to Rare Neurological Challenges' at the EU Parliament and online.
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay
Register now: www.efna.net/mep-february...
#neurology #RareNeurology #RareDiseaseDay