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Reposted by The European Federation of Neurological Associations (EFNA)

ERN-RND @ern-rnd.bsky.social · Jul 7

#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...

Improving the health care system for RND - Iva Galovic (EFNA, patient organization)

YouTube video by ERN-RND

www.youtube.com

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Reposted by The European Federation of Neurological Associations (EFNA)

SEDSConnective @sedsconnective.org · Jul 18

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?...

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Reposted by The European Federation of Neurological Associations (EFNA)

Dopamine Warriors @dopaminewarriorsbc.bsky.social · Mar 16

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

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Reposted by The European Federation of Neurological Associations (EFNA)

Emma Rogan 🇵🇸 @emmadragon.bsky.social · Apr 1

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

The European Federation of Neurological Associations (EFNA) @efna.net · Mar 13

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Apr 9

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

The European Federation of Neurological Associations (EFNA) @efna.net · Apr 9

How can we improve #healthliteracy, including digital #health literacy, leading to better outcomes for all in the #neurology community? Join the conversation using the #StrongerConnected hashtag.

The European Federation of Neurological Associations (EFNA) @efna.net · Apr 9

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.

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The European Federation of Neurological Associations (EFNA) @efna.net · Mar 13

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Mar 13

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

The European Federation of Neurological Associations (EFNA) @efna.net · Mar 13

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Mar 13

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

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Reposted by The European Federation of Neurological Associations (EFNA)

European MS Platform @emspofficial.bsky.social · Mar 4

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

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Feb 27

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Feb 27

The event, entitled 'Shaping the Future: Policy Responses to Rare Neurological Challenges', was kindly hosted by MEP Billy Kelleher. The aim of the event was to improve understanding of the lived experience of those impacted by rare neurological conditions.

The European Federation of Neurological Associations (EFNA) @efna.net · Feb 27

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

Shaping the Future: Policy Responses to Rare Neurological Challenges

YouTube video by European Federation of Neurological Associations

youtu.be

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The European Federation of Neurological Associations (EFNA) @efna.net · Feb 27

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/

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Reposted by The European Federation of Neurological Associations (EFNA)

Dopamine Warriors @dopaminewarriorsbc.bsky.social · Feb 20

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/

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Reposted by The European Federation of Neurological Associations (EFNA)

Migraine Ireland @migraineireland.bsky.social · Feb 27

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...

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Reposted by The European Federation of Neurological Associations (EFNA)

ERN-RND @ern-rnd.bsky.social · Feb 4

With our coordinator Holm Graessner as panelist! Register now for online participation.

The European Federation of Neurological Associations (EFNA) @efna.net · Jan 30

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Jan 30

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

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Jan 30

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

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The European Federation of Neurological Associations (EFNA) @efna.net · Jan 30

And you Emma 🤗

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