NF Ireland

🏃‍♀️ Almost race day! Niamh Senior is running the Manchester Marathon (19th April) for NF Ireland 💛 We’re so grateful for her support, if you can, please donate and help make a difference. 🔗 gofund.me/e96f5d421 @Marathon_Mcr @adidas #ManchesterMarathon #NFawareness

We are deeply saddened to share the passing of Rosaleen Francis Corr, founder member of NF Ireland and a much loved part of our community. Our thoughts are with her family and friends. Funeral Details: rip.ie/death-notice/r…

NF Academy 2026 Rotterdam (22–28 Aug) Aged 19–35. This is a unique opportunity to become an NF Ambassador Join a 1-week training covering NF, advocacy, mental health, and patient involvement. Open to patients, siblings & young parents. 📩 Register interest: info@nf-patients.eu

🌟 NF Awareness Day Meet-up 📍 Emerald Park 🗓 May 17th A cross-border family meet-up with NF Ireland & Childhood Tumour Trust — a great chance to connect and spend time together 💛 🔗 Info & register your interest: nfaireland.ie/emerald-park-n…

💚 NF1 Webinar - 19 March | 2PM 💙 NF Ireland encourages our community to join this free webinar on Neurofibromatosis Type 1 (NF1) care, sponsored by Childhood Tumour Trust and organised by Rare Revolution Magazine. 🎟️ Register for free: us02web.zoom.us/webinar/regist…

CTT NF Summer Camp 2026 📅 25-28 July 📍 Shrewsbury, UK Places open to young people from Ireland (12-17) living with NF. Four days of fun, confidence-building & meeting others with NF. 👉 For details: info@nfaireland.ie or contact us privately on Twitter.

🏃‍♀️ Join Team NF Ireland Vhi Women’s Mini Marathon 2026 📍 Dublin | 🗓 31 May Run, walk or jog and support the NF community 💙 🎽 NF Ireland T-shirt ✔ Training tips & team support Join Team NF Ireland & start your fundraiser: nfaireland.ie/vhi-womens-min… #VhiWMM #TeamNFIrelan

NF Awareness Day Meet-up 📍 Emerald Park 🗓 17 May 2026 NF Ireland & CTT are hosting a cross-border family meet-up to connect, raise awareness & enjoy a supportive day together. Register interest: Ireland: info@nfaireland.ie UK: joanne@childhoodtumourtrust.org.uk

Rare Disease Day - 28 February 2026 Today we stand with everyone living with Neurofibromatosis and all rare diseases. This week, we’ve highlighted NF & Skin Health, raising awareness of the visible and often misunderstood aspects of NF. @rarediseaseday

NF & Skin Health Monitoring matters. Speak to your GP or specialist if you notice: ✔ Rapid growth ✔ Persistent pain ✔ Changes in colour or texture ✔ New or unusual symptoms When in doubt, seek medical advice or contact NF Ireland. #RareDiseaseDay #NFawareness #globalskin

NF & Skin Health Practical skin care matters. ✔ Gentle, fragrance-free products ✔ Regular moisturising ✔ Daily sun protection ✔ Monitor changes & seek advice if concerned Raising awareness this Rare Disease Day. @rarediseaseday @IADPO

Rare Disease Day 2026 NF (Neurofibromatosis) is a genetic condition that often affects the skin. For many, skin involvement is the most visible part of living with NF and one of the most misunderstood. This week, we’re focusing on NF & Skin Health. @rarediseaseday @IADPO

Rare Disease Day - 28 Feb 2026 This year, NF Ireland is focusing on NF & Skin Health. All week we’ll share practical skin care tips, self-monitoring guidance & lived experiences to raise awareness of the skin challenges linked to Neurofibromatosis. @rarediseaseday @IADPO

🏃‍♀️ On 17 March 2026 I’ll run my first half marathon in Mullingar to raise funds for Neurofibromatosis (NF), a condition I was born with. After a 10km run last year, I’m stepping up to raise awareness and support 💜 👉 Donate: idonate.ie/fundraiser/ane…

💜 Rare Disease Caregivers: Your Voice Matters We’ve launched a national survey for caregivers supporting people with rare diseases in Ireland. 🕒 15 mins | 🔒 Anonymous Your experience can help shape better supports and health outcomes. 👉 Have your say: tinyurl.com/RDCaregiversSu…

@CavernomaIre @AlexionPharma @IPPOSI @RareDiseasesIE @rareireland It was a pleasure to meet Sandra at the Rare Disease Summit and to hear about the Cavernoma community. Thank you for contributing to such a collaborative day. NF Ireland are looking forward to more events like this.

💜We attended the inaugural Rare Diseases Summit 2026 Your Voice - Your Story, representing the Cavernoma community. 💪A powerful day of learning, collaboration, and connection. Thanks to @AlexionPharma @IPPOSI @RareDiseasesIE @rareireland and @NfIreland for organising it✨

🏃‍♀️ We’re forming an NF Ireland team for this year’s Vhi Women’s Mini Marathon Whether you walk or run, we’d love you to join us and help raise vital funds for Neurofibromatosis in Ireland. If you’re interested, comment below or send us a message, more details coming soon.

Save the date | 12-14 Nov 2026 | Vienna 🇦🇹 The 2026 European Neurofibromatosis Conference brings together experts, clinicians, researchers & patient reps from across Europe and beyond. Focus: patient involvement in NF research & care. Stay updated: eunf2026vienna.com

🎄 Wishing our NF community a very Happy Christmas Thank you to everyone who supported NF Ireland throughout 2025. This year brought real progress, from expanded clinical services to stronger advocacy for the NF community.