The Neurofibromatosis Association of Ireland – AGM and Open Day
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The Neurofibromatosis Association of Ireland – AGM and Open Day

We're excited to announce the presentations for this year's Open Day, where NF families can gain expert insights from leading professionals.

Date and time

Saturday, November 9 · 10:30am - 4pm GMT

Location

Carmichael Centre for Voluntary Organisations

4 Brunswick Street North D07 RHA8 Dublin Ireland

Agenda

10:00 AM - 10:30 AM

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

10:30 AM - 11:00 AM

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 AM - 11:45 AM

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 AM - 12:30 PM

Paediatrician at the NF1 Clinic

Dr Hisham Ali

• NF1 Clinical Surveillance in Children

12:30 PM - 1:15 PM

Specialist Registrar in Genetics

Dr. Karl Kavanagh

• The Genetic Aspects of NF1 • Family Planning

1:30 AM - 2:15 PM

Light Lunch

2:15 PM - 2:35 PM

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 w...

2:35 PM - 2:55 PM

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.

2:55 PM - 3:15 PM

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.

3:15 PM - 3:35 PM

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.

3:35 PM - 3:45 PM

Former Chairman of NF Ireland

Paul Fox

• Coping strategies for dealing with bullying related to NF.

3:45 PM - 4:00 PM

General Manager, NF Ireland

Fergal Griffin

• The future of NF Ireland & open discussion.

About this event

  • Event lasts 5 hours 30 minutes

This year’s AGM & Open Day will take place on Saturday, 9th November 2024, at the Carmichael Centre, North Brunswick St, Dublin 7. The meeting will begin promptly at 10:30am and run until approximately 4:00pm, with a break for refreshments. We are honoured to have doctors, health professionals, and patient advocates generously share their time and expertise to speak at this event.

We encourage everyone affected by NF, patients, families, and caregivers, to attend. It’s a great opportunity to connect, learn, and share experiences.

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Organized by

Neurofibromatosis Association of Ireland

The Neurofibromatosis Association of Ireland (NF Ireland) was founded in 1985. NF Ireland provide a comprehensive range of services including a 24-hour Helpline, literature on the condition, genetic counselling service 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.

For more information about the Association  and the work we do please see http://www.nfaireland.ie