"Camp has been vital to George’s understanding and accepting not only his diagnosis but also his disability. He tells me all the time that NF1 does not define who he is" #NF1 #CTTNFCamp The National Lottery Community Fund

‼️ Rare Ireland Launches new website ‼️ All of the team at Rare Ireland are delighted to announce our updated website is now live. Remember 1 in 17 individuals in Ireland, will be affected by a rare disease in their lifetime. Visit rareireland.ie

Volunteers Needed! We have a variety of volunteer roles available to support children and their families while in hospital. For more information or to apply, please visit - childreninhospital.ie/volunteer-vaca…

What an incredible day at Camogie Final in Croke Park. Gillian Minnock and her kids met the legendary Marty Morrissey, who was keen to learn about Neurofibromatosis. They also met GAA President Jarlath Burns, who posed with our NF Mascot-Patrick & CTT Mascot-Patches ChildhoodTumourTrust

Children's Hospital Tour: Our ambassador Gillian represent NF Ireland. Hosted by CHI the visit included a tour of the state-of-art facilities. Our mascots, Patrick & Patches, loved exploring. These advancements will greatly benefit our members Children's Health Ireland #ourchildrenshospital

Nichola Shannon is running the 2024 Strandhill Warriors Run to raise funds for NF Ireland. A cause close to her heart as her nephew Shay was diagnosed with NF at just 1 year old. Any donations, big or small, will support NF families & advance research. idonate.ie/fundraiser/Nic…

Exciting news! NF Ireland and Childhood Tumour Trust are organizing a day out at Belfast Zoo. More details coming soon, stay tuned 🐆🐅🐊 ChildhoodTumourTrust RARE Ireland

Tour of the New Children's Hospital CHI parents of NF children can now register for upcoming hospital tours. To join, please message us privately. Tour dates: • Sept 6th – 11 AM to 2:30 PM • Sept 27th – 11 AM to 2:30 PM • Oct 11th – 11 AM to 2:30 PM

Wishing the best of luck to Nichola Shannon today as she runs in the 2024 Strandhill Warriors Run to raise funds for NF Ireland. Every donation, big or small, will help support NF families and drive research forward. You can contribute here: idonate.ie/fundraiser/Nic…

NF Academy 2024 in Rotterdam Three amazing Irish girls are taking part in an empowering program on NF1, NF2, Schwannomatosis, and patient advocacy. Let’s cheer them on as they learn, connect, and grow. Thank you to NF Patients United for organizing.

The FDA has granted Priority Review to our New Drug Application for our investigational MEK inhibitor for children and adults with #NF1-PN. Our EU Marketing Authorization submission has also been validated by the European Medicines Agency. Learn more: ir.springworkstx.com/news-releases/…

Update from NF Academy 2024 in Rotterdam Our NF participants are having an amazing time exploring the beautiful city and diving deep into the program. Proud of their engagement and the valuable experiences they’re gaining. NF Patients United ChildhoodTumourTrust

Rare Ireland’s 3rd annual conference, October 18th 2024 in the Shamrock Lodge Hotel in Athlone. We will feature a series of speakers including Roisin who is living with NF1. eventcreate.com/e/rareireland2… 22Q11 Ireland NFIreland Rare Diseases Ireland Avril Daly 💚 Sally Ann Lynch Anand Saggar

Inspiring day at NF Academy Rotterdam. Amit Ghose, born with NF1, shared his journey from bullying to becoming a voice for kindness and resilience. His powerful message encouraged everyone to embrace who they are and face challenges with courage. #NFAcademy2024 Amit Ghose

Thrilled to see everyone enjoy the NF Ambassador Academy in Rotterdam 🎉 Each participant received a diploma for their involvement. Thanks to NF Patients United and Alexion Pharmaceuticals who made it possible. We are excited for next year already🌟NF Patients United Alexion

Join us for a day out at Belfast Zoo on Oct 12th, 2024 🦒🐅 Meet other families affected by NF1, organized by NF Ireland & Childhood Tumour Trust. Spots are limited—register now. 📧 NI: [email protected] 📧 RoI: [email protected] ChildhoodTumourTrust RARE Ireland

Belfast Zoo on Oct 12th, 2024 🦒🐅 Spots are limited, so be sure to register your interest soon! Meet other families affected by NF1, organized by NF Ireland & Childhood Tumour Trust. 📧 NI: [email protected] 📧 RoI: [email protected] ChildhoodTumourTrust

Rare Ireland Conference Join us for Rare Ireland’s Annual Conference & Disability Info Day on Oct 18 at the Shamrock Lodge, Athlone. Featuring inspiring talks, including Roisin's journey with NF1. Plus, their first Charity Ball🎉 Register: checkout.eventcreate.com/rareireland202… RARE Ireland

Join us for a Family Day at Belfast Zoo 🦁 Hosted by NF Ireland & Childhood Tumour Trust on Sat, Oct 12th, 2024. Free entry & lunch for those with NF1 (under 30) + 1 parent/carer. Spots limited – register now: forms.office.com/e/3Q4PcLd5pK ChildhoodTumourTrust

Join us at the Rare Ireland Annual Conference 2024 on October 18th Hear from inspiring speakers, including Róisín McConnell, who will share her journey with NF1. NF Ireland will also have a stand. Come connect with us! Register now: checkout.eventcreate.com/rareireland202… RARE Ireland