Links
Information & Links to organisations that are relevant to Cavernoma.
Rare Diseases Ireland(RDI) is a patient advocacy national alliance for voluntary groups representing people affected by or at risk of developing a rare disease. RDI is committed to the identification, treatment, and cure of rare disease through programs of education, advocacy and patient engagement.
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Information on a list of services in the area you live in, that are provide by the Health Service Executive(HSE) are on the following website.
Disability services for your county will access your needs, and refer you to the services that are available in your area.
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Rare Ireland is a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland.
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They offer a range of services to support people with epilepsy and their families.
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Their expert teams support individuals and families recovering from the impacts of brain injury by offering services and tools that help them rehabilitate, adapt and live their fullest lives with confidence.
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Headway Ireland provides services and support for people affected by stroke and acquired brain Injuries in Ireland.
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Founded in 1994, Spinal Injuries Ireland (SII) is a registered charity supporting people who sustain a spinal cord injury and their families. They are the support and representative organisation for people with spinal cord injury throughout Ireland.
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Vision Ireland, Ireland’s national sight loss agency, mission is to transform the lives of people who are blind or vision impaired. We work with children and adults across the country with a range of programmes, all designed to ensure the individual can live life confidently and independently.
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Northern Ireland
Northern Ireland Rare Disease Partnership (NIRDP) is a voluntary organisation formed in 2012 with the vision that ‘no-one is disadvantaged due to the rarity of their condition’.
There are approximately 8,000 rare conditions affecting 1 in 17 people in NI.
NIRDP voluntary committee works on a range of projects to advocate, connect, educate and innovate on behalf of the rare disease community. One of the key projects is a virtual support hub supporting those living with and those caring for people with often very challenging and complex medical needs.
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The Northern Health and Social Care Trust provides a range of disability services within the community, at home and in the hospitals.
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All the available services are listed on the following website page.
https://www.northerntrust.hscni.net/services/disability-services/
Brain Injury Matters (NI) was established in 2013 as an independent regional third sector organisation supporting, promoting and empowering those individuals and families affected by acquired brain injury.
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Royal National Institute of Blind People in
Northern Ireland (RNIB NI).
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For anyone affected by sight loss in Northern Ireland and Isle of Man. Providing support at the point of diagnosis, employment, and campaigning for change​
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https://www.rnib.org.uk/nations/northern-ireland/​
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Headway Northern Ireland branch.
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Headway UK provides support and guidance to a network of locally-run groups and branches across the UK and Channel Islands. They offer a wide range of services, including brain injury rehabilitation programmes, carer support, social re-integration, community outreach and respite care. The services available will vary, depending on local needs and resources.
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https://www.headway.org.uk/supporting-you/in-your-area/groups-and-branches/northern-ireland/
Spinal Injuries Northern Ireland(Sp.I.N.I) are a charity which specialises in “post hospitalisation” rehabilitation for all ages in their own area.
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Cavernoma Alliance UK(CAUK) was founded in 2005 by Ian Stuart.
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Their vision is to find a cure for cavernoma by 2030 #CaverNoMore2030.
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They are working hard to achieve this by promoting cavernoma research in the UK alongside the support and information they offer the cavernoma community.
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The European Cavernoma Alliance(ECA) is an informal network of national patient advocacy organisations.
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They depend on funding from charitable grants and the amazing fundraising efforts of our members and supporters.
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Cavernoma Ireland is member of ECA.
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https://sites.google.com/cavernostangiomsverige.org/eca/home
America's cavernoma organisation. Founded in 2002 by Connie Lee.
The Alliance to Cure Cavernous Malformation works closely with academic researchers, treatment developers, government, and medical professionals to change the future.
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