Northern Ireland Neurological Charities Alliance

18/06/2026

✨Member Spotlight✨

This week’s Member Spotlight shines on Hope 4 ME & Fibro Northern Ireland, who are working alongside the World M.E. Alliance to improve education, patient safety, and outcomes for people living with Myalgic Encephalomyelitis (M.E.) and Post-Covid M.E. in Northern Ireland, where an estimated 38,000 people may now be affected. Many patients still face delayed diagnosis, misunderstanding, and a lack of specialist services.

To help address this, the charity co-produced a free 1-hour CPD-certified M.E. Clinical Update webinar with General Practice Northern Ireland (GPNI), aligned with the NICE NG206 guideline and focused on the safe recognition and management of M.E., including Post-Exertional Malaise (PEM). The initiative has received formal support from the Northern Ireland Health Minister and Department of Health, who are helping promote the training across the healthcare system to encourage widespread uptake among healthcare professionals.

To learn more and view education resources visit their website, linked below:

hopew4me fibro

11/06/2026

✨Member Spotlight✨

The Child Brain Injury Trust is the UK's premier charity dedicated to childhood-acquired brain injury support.

For over 30 years, The Child Brain Injury Trust has been the trusted voice providing comprehensive resources and advocacy for families navigating paediatric brain injury recovery. Whether they are dealing with traumatic brain injury, stroke, brain tumours, or other neurological conditions in children, their family services provide practical, emotional, and personalised support to families navigating life after a childhood-acquired brain injury.

From one-to-one guidance to events, resources, and advocacy, The Child Brain Injury Trust walks alongside families so they feel heard, supported, and never alone.

Referrals into the service can be made online here:

The child brain injury trust (CBIT) are a national charity supporting families and professionals affected by Childhood Acquired Brain Injury (ABI) for the

04/06/2026

🧠 𖠣 June is Cavernoma Awareness Month (brain and spinal cord)

A cavernoma is a cluster of abnormal blood vessels in the brain or spinal cord. Although rare, cavernomas can cause neurological symptoms including seizures, headaches, bleeding (haemorrhage), and difficulties with speech, vision, memory, and movement.

Cavernoma Ireland is marking June by raising awareness of this condition and supporting individuals and families affected across Ireland.

Learn more at www.cavernomaireland.ie

04/06/2026

📣Health & Wellbeing for Polio Survivors — Conference Day 2026📣

The British Polio Fellowship Conference Day brings together polio survivors, carers, and professionals for a day of learning, discussion, and connection.

Taking place in London on Saturday 4 July 2026 the day will focus on topics that matter most to polio survivors and those who support them, including physical health, emotional wellbeing, fatigue, and practical adaptations for everyday living.

The programme will include keynote sessions, breakout discussions, lived experience stories, and a panel conversation looking at the future of services for polio survivors. There will also be time to network, speak with others who understand life after polio, and visit information stands from relevant organisations.

Register via the link below:

Health & Wellbeing for Polio Survivors — Conference Day 2026 Join us for a brand-new British Polio Fellowship Conference Day focused on wellbeing for polio survivors. This one-day event brings together polio survivors, carers, and professionals for a day of learning, discussion, and connection. It...

28/05/2026

✨Member Spotlight✨

Huntingtons Disease Association NI (HDANI) works across Northern Ireland providing support, advice, information, advocacy services and opportunities to connect for people living with or otherwise impacted by Huntingtons Disease (HD).

We have over 1,000 service users of all ages right across the province ranging from people who are symptomatic with HD, those who have a predictive positive test but no symptoms yet, those at risk and untested to other family members who have loved ones with the condition.

Part of our pledge to service users is to help raise awareness and increase understanding of the disease to reduce the stigma they face and help ensure that they receive the support and services they need when they need it.

HDANI launched a fantastic peer support project early this year - HD Hive - which has been designed to help the HD community connect, create and chat. Details of upcoming sessions are included in the image below.

For further information email [email protected] or visit their website: www.hdani.org.uk

21/05/2026

📣Have your voice heard 📣

Have you applied for / are you in receipt of PIP (Personal Independence Payment)? The UK Government has put out a Call for Evidence which will feed into the work being carried out in the Timms Review, to measure whether PIP is fit for purpose in the modern world.

The purpose of PIP is to provide a contribution to the extra costs faced by disabled people and people with long-term health conditions, in order to help them live more independently.

However, many of our member organisations have heard that PIP is not fit for purpose and that the assessments and re-assessments can be extremely stressful and dehumanising.

The Department of Work and Pensions is currently reviewing if PIP is fit for purpose through the Timms Review and they are now looking for evidence from the community on this matter.

The call for evidence opened on 19th March 2026 and will close on 11.59 pm on 28th May 2026.

Your voice matters and will make a crucial contribution to the work being carried out by the Timms Review. For more information click on the link below.

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14/05/2026

✨Member Spotlight✨

FND Matters

Northern Ireland has over 5,000 people living with Functional Neurological Disorder (FND). This is a common condition, yet information and awareness in Northern Ireland is low.

FND Matters offer counselling and community support to those affected by FND, as well as raising awareness of the condition through their work with health and social care professionals. To find out more, visit their website:

Our Mission. Our Community. Donate Today Fundraise for us   Northern Ireland has over 5000 people living with Functional Neurological Disorder (FND). This is a common condition, yet information and awareness in Northern Ireland is low. This site aims to raise awareness, inform and provide peer supp...

30/04/2026

niNCA member, The Migraine Trust, wants to hear from you!

Do you live with migraine? Share your experience of accessing treatment for migraine in the Migraine Trust's new survey.

Findings from the survey will be used to help improve care for the one in seven people living with the condition.

Survey closes on 4 May.

https://www.surveymonkey.com/r/GZJM52V

23/04/2026

This week our ✨Member Spotlight✨ is shining on the MS Society, who have joined together with the UK’s leading MS charities during MS Awareness Week to challenge assumptions about the condition, and the harm these cause.

From being underestimated at work to being harassed for using a disabled parking space, living with MS is tough. Incorrect assumptions can lead to hurtful behaviour, and real-life consequences.

They're calling on the public to listen, learn, and understand MS before saying something that could hurt or offend.

To learn more click on their website link below.

https://www.mssociety.org.uk/get-involved/ms-awareness-week

16/04/2026

"A shift in geography must not dilute specialist expertise"

Read niNCA's statement on the Department of Health's vision for a Neighbourhood Model of Care.