13 May 2021
The Neurofibromatosis (NF) Association of Ireland are taking part in a nationwide call to ‘Shine a Light on NF’ and bring attention to a genetic disorder that affects more than 2,500 children and adults living in Ireland and 2 million people worldwide.
The worldwide NF community are recognizing May 17th as World NF Awareness Day and they’re hoping to raise awareness for this genetic disorder that currently has no cure. Over the years, hundreds of landmarks around the world have helped them Shine a Light on NF. This year the following buildings will be light up in Blue or Blue and Green for our association, the Mansion House and Convention Centre in Dublin, Kilkenny Castle, Bunratty Castle in Co Clare and King John’s Castle in Limerick.
The disorder is Neurofibromatosis, or NF, which is a genetic disorder that causes tumours to grow on nerves throughout the body, and may cause blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and cancer.
NF Ireland aim to be a voice for NF patients and their families. Our primary aim is to inform sufferers and their families of the disorder, supporting them and letting them know they are not alone with the condition. The organisation provide support and information on Neurofibromatosis to patients, families, and healthcare providers.
Depending on the individual needs of our members they do our very best to provide them with the most up to date information on their condition. Much can be done to effectively manage NF1 and help affected individuals lead full, healthy lives. Thanks to advances in NF1 research, new discoveries about the condition are being made every year.
They have met tons of other people living their lives and fighting NF with strength, dignity and even a sense of humor in Ireland. NF is a rare disease, and one of the most important things they can do is raise awareness and talk about what it means to live with NF.
NF is classified as a rare disease, and to see such visible support on such well-known landmarks will lead to tremendous excitement and pride among the entire NF community throughout Ireland.
The Neurofibromatosis Association of Ireland are a resident Carmichael resident organisation. May is NF Awareness Month and they are inviting other members of the Ireland community to fight with our family by learning more about NF at www.nfaireland.ie or contacting us at our Helpline: 085 702 0024 or Email: info@nfaireland.ie
