News

Cavernoma Ireland at the
European Neurology Conference

Our Chairperson attended the inaugural conference of the European Federation of Neurological Associations (EFNA) in Dublin in September, joining people living with neurological conditions, patient organisations, policymakers, clinicians, researchers and industry representatives from across Europe.

EFNA has championed the rights and needs of people living with neurological disorders across Europe for 25 years. Its inaugural conference brought together the wider neurological community to discuss how collaboration, patient involvement and innovation can help shape the future of neurology in Europe.

The two-day programme covered a range of important themes, including patient empowerment and advocacy, research and treatment, AI and digital health, access to neurological services, and the future of neurological care and policy.

For Cavernoma Ireland, many of these discussions were particularly relevant to the cavernoma community, including the importance of listening to lived experience, timely diagnosis, access to specialist knowledge and care, and ensuring that people living with neurological conditions have a meaningful voice in decisions that affect them.

The conference also provided a valuable opportunity to meet and learn from other patient organisations and those working across the wider neurological community.

Our Chairperson returned with new connections, fresh perspectives and plenty to reflect on as we continue our work supporting people affected by cavernoma in Ireland.

A big thank you to EFNA for bringing the neurological community together in Dublin.

Cavernoma Ireland is Now an Officially Registered Charity

We are absolutely delighted to announce that Cavernoma Ireland is now officially a registered charity in Ireland.

This is a very important milestone for Cavernoma Ireland and for the cavernoma community we are here to support.

Over the years, Cavernoma Ireland has worked hard to build a strong, supportive community for people affected by cavernoma in Ireland, along with their families, carers and supporters.

We have also put considerable effort into raising awareness of cavernoma and its impact, reaching more people and helping to improve understanding of this often little-known condition.

Our Work

Our work includes:

Providing reliable information and education about cavernoma
Connecting people affected by cavernoma and creating opportunities for peer support
Providing advocacy and helping people have their voices heard
Raising awareness of cavernoma and its impact
Organising online and in-person meetings, talks and awareness events
Working with healthcare professionals, researchers and other organisations to improve understanding and outcomes

A New Chapter for Cavernoma Ireland

Becoming a registered charity is an exciting step forward and gives Cavernoma Ireland a stronger foundation from which to continue and develop this work.

It will support us as we work to expand what we can offer to people affected by cavernoma, strengthen our community, raise awareness, provide reliable information and support, and build connections across Ireland.

Most importantly, we want to say a huge thank you to everyone who has supported Cavernoma Ireland and helped us reach this milestone. Whether you have been part of the community from the beginning or have only recently joined, your support has helped us get to where we are today.

We are incredibly proud of how far our community has come and excited about what we can achieve together in the future.

This is an exciting new chapter for Cavernoma Ireland.

Registered Charity

Cavernoma Ireland
Registered Charity Number: 20207090

Thank you for being part of our community and for helping us create a stronger voice and a supportive community for everyone affected by cavernoma in Ireland.

Together, we can continue to make a difference.

Ireland Lights Up
for Cavernoma Awareness Day

Shine A Light On Cavernoma - Ireland June 2026_edited.jpg

For the first time ever, buildings and landmarks across Ireland were illuminated in red to mark Cavernoma Awareness Day on 14 June, helping to raise awareness of cavernoma and showing support for people living with the condition and their families.

This was a significant milestone for Cavernoma Ireland, with councils and communities across the country coming together to support our awareness campaign. Seeing buildings lit up across Ireland sent a powerful message that no one affected by cavernoma is alone.

We would like to thank every local authority, organisation, supporter, and volunteer who helped make this year's campaign such a success.

To read more about our activities throughout June Awareness Month - including the nationwide building illuminations, photographs from the evening, awareness events, and other campaign highlights - please visit our June Awareness Month page.

Together, we are continuing to raise awareness of cavernoma across Ireland.

June Awareness Month

In Person Event June - 2026
Dublin

Cavernoma Ireland's Annual In-Person Awareness Event took place at the Carmichael Centre, Dublin, on 14th June as part of Cavernoma Awareness Month. The event brought together people affected by cavernoma, along with family members, caregivers, friends and supporters, for an afternoon of learning, connection and shared experiences.

A special thank you to Mr Gulam Zilani, Consultant Vascular Neurosurgeon at Beaumont Hospital, who delivered an insightful presentation on cavernoma from a neurosurgeon's perspective. His expertise and willingness to engage with attendees were greatly appreciated by everyone present.

We would also like to thank Larry Cuffe, Cavernoma Ireland's Risk Assessment Officer, who presented an update on current research into potential non-surgical cavernoma treatments on behalf of our Science & Research Officer, Charlotte Cuffe, who was unfortunately unable to attend. It was encouraging to hear about the important research taking place internationally and the hope it offers to those affected by cavernoma.

The event provided a valuable opportunity for attendees to connect with others who understand the challenges of living with cavernoma, share experiences and learn more about current developments in treatment and research.

Events such as these play an important role in raising awareness, building connections and ensuring that nobody affected by cavernoma feels alone. We thank everyone who attended and contributed to such a positive, informative and supportive afternoon.

We look forward to welcoming even more members of the cavernoma community to future events. Together, we can continue to raise awareness, support one another and give a stronger voice to everyone affected by cavernoma.

RAiN Fest Conference

RAiN Cup O'Collaboration Members - Includes Sandra from Cavernoma Ireland

On Saturday 28th April our Chair Sandra Phair and Vice-Chair Charlotte Cuffe attended the RAiN Fest 2026 Conference.

This is an event focusing on rare disease research, education and innovation in action, hosted at University College Dublin.

The theme:
“Voices Rarely Heard: Empowering Young People Living with Rare Diseases - From Lived Experience to Leadership.”

A really educational event, and inspiring to hear from so many incredible patient advocates and researchers.

RAiN is 'All-Ireland Rare Diseases Interdisciplinary Research Network'. The network was set up and funded by the Shared Island Unit in the Department of An Taoiseach under the Government of Ireland’s New Foundations Scheme, and is supported by University College Dublin and Queens University Belfast.

Inaugural

Rare Diseases Summit 2026 - Your Voice, Your Story.

Sandra at the Rare Disease Summit January 2026.jpg

In January, Sandra our Chairperson attended this landmark event, a collaboration between Alexion, AstraZeneca Rare Disease, IPPOSI,

Rare Disease Ireland, Rare Ireland and the Neurofibromatosis Association of Ireland.

A forum for patient groups dedicated to supporting individuals living with rare diseases across Ireland.

It was a powerful day of learning, collaboration and connection - strengthening patient voices and advancing care for people living with rare diseases across Ireland

Pictured here:

Maureen from Ataxia Ireland and Sandra Chairperson of Cavernoma Ireland

Cavernoma Ireland at Cavernoma Alliance UK's
20th Anniversary

CAUK 20th CAUK and CavIre Orginial Size.jpg

Cavernoma Ireland was delighted to attend Cavernoma Alliance UK’s 20th Anniversary Celebration in London.

A wonderful event honouring two decades of

support, advocacy, and community.

Here's to many more years of impact and hope!

Pictured here:

CAUK’s Charity Manager Helen Evans, and CAUK's Founder Dr. Ian Stuart. Cavernoma Ireland's Chairperson Sandra Phair and Vice Chair Charlotte Cuffe.

In Person
Event June - 2025

We were so delighted to be able to host two speakers at our in person event on cavernoma awareness day!

We had a brilliant talk from Gene with Acquired Brain Injury Ireland all about living with an acquired brain injury. We all learnt many valuable tips and tricks, thank you so much!

The next was a very relatable talk from Larry, about a parents perspective of cavernoma diagnosis and treatment, which prompted a lovely discussion afterwards.

Thank you everyone for coming, we are already looking forward to next year's event!

We hope everyone got a few tips and enjoyed the event.

Lenister House

Cavernoma Ireland was at the Oireachtas 'All Party Group meeting on Rare Diseases' in Leinster House, Wednesday 26th February.

Sandra Phair, Chair of Cavernoma Ireland, attended the meeting.

The meeting was marking Rare Disease Day by reconvening the Oireachtas All Party Group on Rare Diseases for the first time with the new Dáil. Organised by Rare Diseases Ireland(RDI).

The Meeting;

- Highlighted the challenges of living with a rare disease in Ireland.

- Gave details of RDI's hope for the future with the imminent publication of a new National Rare Disease Strategy; and

- Outlined the opportunities that exist for Ireland as RDI seeks to embed innovation into the heart of care for people living with rare diseases.

The Oireachtas is the bicameral parliament of Ireland. Leinster House is the seat of the Oireachtas,

Cavernoma Ireland
Member's Of

We are now members of Rare Diseases Ireland and

IPPOSI (Irish Platform for Patients Organisations, Science & Industry).

Rare Diseases Ireland is “a patient advocacy national alliance for voluntary groups representing people affected by or at risk of developing a rare disease.”

IPPOSI is “the collective voice of patients, science and industry in Ireland’. Their vision is to be “The patient voice is at the centre of all health policy, care, research and innovation in Ireland.”

Looking forward to the future.

#StrongerTogether

Also Members of