Get Support
You don’t have to go through this alone.
Living with cavernoma - or supporting someone who is - can feel confusing, frightening and isolating at times. Cavernoma Ireland is here to offer information, understanding and connection.
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Whatever stage you’re at, we’re here to help.
Need Support Now
If you’d like to talk to someone or ask a question, you’re very welcome to get in touch.
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Email: cavernomaireland@gmail.com
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Social Media Direct Message: https://www.facebook.com/CavernomaIrelandSupport/
Our Website: Contact Form
We aim to respond as soon as possible.
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You don’t need to have everything figured out before contacting us. It’s okay to reach out just to talk.
How We Can Support You
Peer Support​
Connecting with others who truly understand can make a real difference. We offer peer support for people living with cavernoma, as well as for family members and carers supporting a loved one.
Closed Facebook Group
Our closed Facebook group is a supportive, private space where you can connect with others who understand life with cavernoma.
You’re welcome to share, ask questions, or simply read along - whatever feels right for you.
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Private and confidential
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Supportive and non-judgemental
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Available anytime, at your own pace
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Join the group: https://www.facebook.com/groups/CavernomaIreland
Monthly Coffee Catch-Up (Zoom)
A relaxed monthly online catch-up where you can meet, chat and connect with others impacted by cavernoma who are living in Ireland. It’s an informal space - there’s no pressure to speak and you’re very welcome just to listen.
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Held monthly on Zoom
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Friendly, informal conversation
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You can find details of our next catch-up on the Events page.
Information & Resources
At Cavernoma Ireland, we want to make it easy for you and your family to access reliable information and support. Our resources include:
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​Easy-to-understand, up-to-date website pages about cavernoma, under the Cavernoma tab, covering what is a cavernoma, symptoms of brain and spinal cavernoma, treatment and much more.​
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Information leaflet and flyer​ for quick reference.
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FAQs answering practical questions, such as driving with cavernoma
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Whether you’re newly diagnosed, caring for someone with cavernoma, or just looking to learn more, these resources are here to guide and support you every step of the way.
Support with Healthcare Conversations
Medical appointments can feel overwhelming. We can help you:
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Prepare questions for your doctor
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Understand common terms and tests
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Feel more confident advocating for yourself or your loved one
Newly Diagnosed?
Being told you have a cavernoma can bring up many emotions - fear, uncertainty and lots of questions. That’s completely understandable.
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If you’re newly diagnosed, you might find it helpful to:
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Learn what cavernoma is and how it can affect people differently
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Understand common symptoms
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Find out what questions to ask your healthcare team
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Connect with others who have been there
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Take things one step at a time.
Common Questions
Is the support confidential?
Yes. All contact and peer support is treated with care and confidentiality.
Do I need a diagnosis to get support?
No. You are welcome to reach out at any stage, whether you’re awaiting diagnosis, supporting someone else, or just looking for information.
Is there a cost?
No. All of our support services are completely free.
Is membership free?
Yes. Membership of Cavernoma Ireland is free.
Can family members contact you?
Yes. We support patients, families and carers.
Who provides the support?
Our support is provided by trained volunteers with lived experience of cavernoma.