@NfIreland

At NF Ireland we aim to be a voice for NF patients, carers and their families. Reg Charity: CHY 6657

 [email protected]
nfaireland.ie
Joined May 2013
  • Tweets1.7K
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  • Followers445
635Media
NF Ireland retweeted
NF Ireland@NfIrelandOct 14
Have you registered for the NF Ireland Open Day 2026 Join us at Croke Park on Saturday 24 October for clinician talks, personal stories and connection with the NF community. 🕙 10am-4pm | ☕ Registration from 9am | 🅿️ Free parking 🎟️ Register: buytickets.at/theneurofibrom…
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Have you registered for the NF Ireland Open Day 2026 Join us at Croke Park on Saturday 24 October for clinician talks, personal stories and connection with the NF community. 🕙 10am-4pm | ☕ Registration from 9am | 🅿️ Free parking 🎟️ Register: buytickets.at/theneurofibrom…
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October’s NF Magazine is out now This issue explores breast cancer risk in women with NF1, expert advice & the inspiring story of a breast cancer survivor 💙💚 Read online: nf-patients.eu/magazine/ Thanks to NF Patients United for highlighting this important topic. @NfPatients
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NF Ireland Open Day 2026 - Meet Our Family Support Team Yvonne O’Donnell - Living with NF1 & family experience Róisín McConnell - Living with NF1 & sharing personal journey Áine Byrne - Advice on mental health & our NF Sensory Box Registration required: buytickets.at/theneurofibrom…
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NF Ireland Open Day 2026 We’re delighted to announce our programme, with clinicians & speakers covering NF services, neurology, genetics, along with personal experiences from the NF community. 📅 24 October 2026 🎟️ Advance registration required buytickets.at/theneurofibrom…
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NF1 Young Adult Summer Camp 2026 Aged 18-30 and living with NF1? 📅 Dates: 28th-30th August 📍 Location: JCA Condover Hall, Shrewsbury 💸 Cost: Just £50 contribution Accommodation, food, activities are included 💙💚 Spaces are limited. 📧 Email: [email protected]
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NF Ireland retweeted
NF Ireland@NfIrelandAug 4
Cork Summer Meet-Up🌞 Join us this Saturday, for an afternoon of connection with other families living with Neurofibromatosis. 📅 Sat, 8th Aug 🕑 2:00 pm - 6:00 pm 📍 Douglas Community Centre Event details & registration link are available on NF Ireland: nfaireland.ie/
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Cork Summer Meet-Up🌞 Join us this Saturday, for an afternoon of connection with other families living with Neurofibromatosis. 📅 Sat, 8th Aug 🕑 2:00 pm - 6:00 pm 📍 Douglas Community Centre Event details & registration link are available on NF Ireland: nfaireland.ie/
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NF Ireland Cork Summer Meet-Up 📆 Saturday, 8th August. 📍 Douglas Community Centre, Cork 🕑 2:00–6:00pm A relaxed afternoon for individuals and families affected by Neurofibromatosis to meet others, and enjoy time together: Register (free): eventbrite.ie/e/199621731372…
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Our NF Ireland mascot, Patrick, was delighted to meet Childhood Tumour Trust's mascot, Patches, on Day 1 of the CTT Summer Camp 💙💚 #ChildhoodTumourTrust #NFIreland @JCA_Adventure
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Wishing our young members an amazing weekend. This weekend, members of NF Ireland are attending the Childhood Tumour Trust Summer Camp. A chance to make friends who truly "get it", build confidence, and create lasting memories. Thank you to CTT for making this possible 💚💙
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🌞 Cork Summer Meet-Up 📅 Sat 8 Aug | 🕑 2–6pm 📍 Douglas Community Centre A relaxed afternoon to connect with families living with NF. 📩 RSVP: [email protected] or DM us. Supported through our Charity Partnership with the Central Bank of Ireland. #NFIreland @centralbank_ie
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We're delighted to share that NF Ireland has been awarded funding through the #RTEToyShowAppeal to deliver a respite camp for children living with Neurofibromatosis. Helping children build confidence and realise they're not alone 💙💚 @RTEOne @RTELateLateShow @CommunityFound
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Something exciting is on the way... We've got some wonderful news to share with our NF Ireland community, and we can't wait to tell you all about it! Keep an eye on our social media channels next week... 👀💙💚 #rtetoyshowappeal @RTEOne @RTELateLateShow @CommunityFound
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NF Ireland retweeted
Alexion@AlexionPharmaJan 21
Typically diagnosed in early childhood, #Neurofibromatosis type 1 (NF1) is a rare, progressive, genetic condition that involves the development of nonmalignant tumours that may affect the brain, spinal cord and nerves.
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Neurofibromatosis is a condition that so many of our friends and family are affected by, but that remains widely misunderstand and too often invisible. It is under-recognised and under-resourced in our health system. I spoke to the Minister yesterday about the need for a Neurofibromatosis Centre here in Ireland so that those with the condition have equal access to care. @NfIreland – at Ireland
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NF Ireland retweeted
Alexion@AlexionPharmaMay 30
#Neurofibromatosis (NF) is a rare, genetic condition involving the development of nonmalignant tumours that may affect the brain, spinal cord and nerves. As the most common type of NF, neurofibromatosis type 1 (NF1) affects about 1 in 3,000 people worldwide.
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A huge thank you to Acorn Montessori & Crèche, Naas, Co. Kildare, for raising an incredible €1,000 for NF Ireland through their Pyjama Day Fundraiser. Thank you to the families & staff for their support & for helping to raise awareness of Neurofibromatosis in their community💚
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NF1 HealthSKETCH We've added a short animated video to the NF Ireland website that explains NF1 in a simple and easy-to-understand way. Developed with the Childhood Tumour Trust (CTT), special thanks to Dr Carly Jim, Manchester. Metropolitan University. 👉 nfaireland.ie
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💚 Mini Marathon 2026 💙 A huge thank you to everyone who ran, walked & fundraised for NF Ireland at this year's Vhi Women's Mini Marathon. Whether in Dublin or taking part from elsewhere, every step helped raise awareness for Neurofibromatosis & support for the NF community.
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