The Neurofibromatosis Association of Ireland

NF1 and Breast Cancer Mythbusters Women with NF1 have an increased risk of breast cancer and are predisposed to develop cancer earlier in life than the general population. Those under 50 are at a 5-fold increased risk. Not all breast lumps or unusual changes to your breast mean you have cancer. There can be many reasons to explain new changes, including hormones. Most changes turn out to be natural and harmless but it is still important to get them checked out. While prolonged radiation can cause cancer the amount of radiation delivered from a breast x-ray (mammogram) is very low. You’d receive a similar amount flying from London to Australia and back. The benefits of screening far outweigh the risks. #NF1 #lookfeellearndone #neurofibromatosis #breastcancerawareness #childhoodtumourtrust

Women with NF1 have increased risk of getting breast cancer Prof Gareth Evans was part of a team to first demonstrate an increased risk of breast cancer in women with NF1. Dr Evans highlights the need for women to be breast-aware at all ages to feel empowered about their health. "Women with NF1 have around a 4% risk of getting breast cancer between 30 and 39. That is a significant risk." Prof Gareth Evans #NF1 #lookfeellearndonee #neurofibromatosis #ʙʀᴇᴀsᴛᴄᴀɴᴄᴇʀᴀᴡᴀʀᴇɴᴇss #childhoodtumourtrust

NF1 Health Hero - Caitríona Plunkett, PhD Researcher Thank you to Caitríona Plunkett, a PhD researcher from Dublin and a graduate of Manchester Metropolitan University’s School of Psychology. Caitríona has dedicated her work to empowering women with NF1, particularly around breast cancer awareness and early intervention. After her own journey with breast cancer, she was inspired to help young women with NF1 access clear information and strong support. Her impactful research, generously funded by the Childhood Tumour Trust, advocates for women with NF1 to have a stronger voice in their healthcare. Thank you, Caitríona, for your dedication. Watch Caitríona discuss her work here: https://lnkd.in/eEeNXeZp This infographic was created by RARE Revolution Magazine for Childhood Tumour Trust. #NF1 #lookfeellearndonee #neurofibromatosis #ʙʀᴇᴀsᴛᴄᴀɴᴄᴇʀᴀᴡᴀʀᴇɴᴇss #childhoodtumourtrust

NF1 Breast Cancer Self-Check Guide Women with NF1 are at an increased risk of breast cancer from the age of 30. It's important to learn to self-check. If you notice any changes that don’t feel normal get them checked by a medical professional. Checking your breasts regularly can help spot any changes and catch breast cancer early, which can mean improved outcomes. Look. Feel. Learn. Done. #NF1 #lookfeellearndone #neurofibromatosis #breastcancerawareness #childhoodtumourtrust

Rare Ireland Conference, 2024 Thank you to everyone who joined us for Rare Ireland’s 3rd Annual Conference and Disability Information Day at the Shamrock Lodge Hotel in Athlone. We loved meeting the NF community and sharing updates about our upcoming Open Day, the latest NF research, and our NF1 Breast Cancer Awareness literature. The day was filled with inspiring talks, including an unforgettable session with Róisín McConnell, who shared her powerful journey with NF1. Rare Ireland

Rare Ireland Annual Conference We’re looking forward to welcoming everyone who has registered for Rare Ireland’s 3rd Annual Conference and Disability Information Day on Friday, October 18th, at the Shamrock Lodge Hotel in Athlone, starting at 10 AM. The day will include inspiring talks, including a special session with Róisín McConnell, who will share her journey with NF1. Her story of resilience and commitment to making a difference for others with NF is sure to leave an impact. Thanks again to everyone who has signed up. We can’t wait to see you there. Rare Ireland

🐅 What a Fantastic Family Day at Belfast Zoo 🦒 A huge thank you to everyone who joined us on Saturday for our special event with NF Ireland and Childhood Tumour Trust. It was an amazing day spent with wonderful families, and we hope you all enjoyed the zoo, the giraffe talk, and some great company. We’re so grateful for your participation, and it’s days like this that remind us how important our community is. Looking forward to more days like this 🌟 Childhood Tumour Trust #BelfastZoo

Join us for The Neurofibromatosis Association of Ireland's Open Day on Saturday, November 9th, 2024. Gain valuable insights from leading NF specialists, healthcare professionals, and patient advocates dedicated to supporting NF families. For more details and to reserve your free tickets, visit: https://lnkd.in/eYvzrMNC

Princess Alannah's Glowing Adventure A Book for Children with NF1 – Available Now Sarah Bankuti’s new children’s book, Princess Alannah’s Glowing Adventure, is now available on Amazon. This heartwarming story follows Alannah, a mermaid with NF1, as she embarks on exciting adventures and celebrates being different. Available in Kindle, hardcover, and paperback. Sarah Bankuti NF Patients United Childhood Tumour Trust