The Voice for NF Patients & Families

  • Neurofibromatosis Association of Ireland Open Day

    Ashling Hotel Dublin 8

    Saturday, November 9th, 2024

    Continue to Register

  • NFPU Magazine Focusing on Optical Issues

    October Edition

    Subscribe

  • NF1 Breast Cancer Awareness

    Look, Feel, Learn, Done

    Coming Soon

  • Princess Alannah's Glowing Adventure

    A Book for Children with NF1

    Available Now on Amazon

  • 24 Hour Helpline

    Here When You Need Us

    Learn More

  • The DFI Podcast

    The Disability Federation of Ireland talks to NF Ireland

    Listen Now

  • Children in Hospital Ireland Information Hub

    Preparing for Your Child's Hospital Care

    Learn More

NF Association of Ireland Open Day

Saturday, November 9th 2024

  • 10.00 - 10:30

    Start

    Refreshments, including tea and coffee, will be served upon arrival.

  • 10:30 - 11:00

    NF Ireland AGM NF Ireland Directors & Board

    Chairperson’s Annual Report for 2024 • Treasurer’s Annual Report and Presentation of Accounts for 2023

  • 11:00 - 11:45

    Consultant Dermatologist Dr. Veronika Dvorakova

    Paediatric Dermatology Care for NF1 Patients • Selumetinib for Plexiform Neurofibromas in Children • NFX-179 Topical Gel Trial Publication for Cutaneous Neurofibromas

  • 11:45 - 12:30

    Paediatrician at the NF1 Clinic Dr Hisham Ali

    NF1 Clinical Surveillance in Children

  • 12:30 - 13:15

    Specialist Registrar in Genetics Dr. Karl Kavanagh

    The Genetic Aspects of NF1 • Family Planning

  • 01:30 - 14:15

    Light Lunch

  • 14:15 - 14:35

    Co-Founder, Rare Ireland Louise O’Keefe

    Rare Ireland is a parent-led charity supporting families with rare conditions. Overview of Rare Ireland’s services, including financial assistance for therapies and counselling, and collaboration with private genetic consultants.

  • 14:35 - 14:55

    NF Ireland Patient Advocate Gillian Dunne Minnock

    The Disability Rights Bill and the Expansion of Newborn Screening through the Get Rare Aware Campaign and NF Patient Advocacy.

  • 14:55 - 15:15

    NF Ireland Ambassador Cathy Milner

    Insights from the NF Patient Academy in Rotterdam, highlighting Alexion’s engagement with patients in phase 2 NF clinical trials.

  • 15:15 - 15:35

    NF Ireland Ambassador Aine Byrne

    Personal story on living with NF, accompanied by a video presentation on her experience at the NF Patient Academy in Rotterdam.

  • 15:35 - 15:45

    Former Chairman of NF Ireland Paul Fox

    Coping strategies for dealing with bullying related to NF.

  • 15:45 - 16:00

    General Manager, NF Ireland Fergal Griffin

    The future of NF Ireland & open discussion.

Register

Support & Community

At NF Ireland we aim to be a voice for NF patients and their families. During our work we often meet people who work hard to raise awareness for NF and to fundraise so that we can continue to be a voice for NF patients and their families. We call these people our NF Hero’s

Fundraising & Awareness

To provide information on NF to patients, doctors, consultants and teachers and to promote awareness and an understanding of the problems encountered with the disorder

Neurofibromatosis (NF) is a genetic condition. This means it belongs to a group of health conditions that can be passed on in families from one generation to the next through the process of genetic inheritance. NF is caused by a mutation in one of the genes. About half of the people who have NF have no family history. In other words, it has occurred “out of the blue” with no-one else in the family being affected. This is called a spontaneous gene mutation. The other half of people will have inherited NF from their mother or father.

What is NF?

Get in touch.

NF Ireland provide a comprehensive range of services including a 24-hour Helpline, literature on the condition and information but its 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.

Make a donation

NF Ireland relies on the donations of the many individuals and companies who give their money and time on behalf of the charity. We appreciate every bit of help we can get which helps us continue our work.