Rising Voices with Orla Nolan

Belfast regional meetup 2024

Thank You - Scoil Chroí Naofa for hosting a wonderful fund raising and awareness raising day on behalf on their 5th class student with narcolepsy

Virtual Call March 24

Cork’s regional meetup Feb 2024

The 14th European Narcolepsy Days (END) conference took place in November 2023 in Leiden, the Netherlands, with a wide range of participants: researchers; neurologists and other health care professionals; representatives from the pharmaceutical industry; patients with narcolepsy and idiopathic hypersomnia (IH); their relatives and parents of children with narcolepsy.

During a patient session organised by eNAP (European Narcolepsy Alliance for Patients), the participants discussed the challenges faced by people with narcolepsy/IH at different stages of life. In addition to the participants from the conference, several Dutch narcolepsy patients and parents of children with the disease also contributed. They were divided into 10 groups, with two groups in each of the five subjects: newly diagnosed; parents of children; teenagers; young adults and adults.

Here is the write up by Astrid Kabelmann-Jensen, M.Sc. Public Admin. (Danish narcolepsy patient) and Alan Hickey, PhD. (eNAP and Narcolepsy Ireland)

Narcolepsy Ireland hosted a conference for World Narcolepsy Day

Download the latest Narcolepsy for Educators pdf here

Narcolepsy Ireland and Sound Ireland are delighted to announce this year’s Suddenly Sleepy Saturday event.

From today, hidden disability Sunflower Lanyards will be available from the Customer Service Desk in Tesco Stores store. The Hidden Disabilities Sunflower lanyard is designed to act as a discreet sign that somebody has a hidden disability and may need additional assistance while shopping. 🌻

I was diagnosed with Narcolepsy/Cataplexy, a noted sleep disability at the age of 51. Simply put, the sleep part of my brain stopped working. My stupid, spongy mass couldn’t work out when I should sleep or stay awake. Notable symptoms being excessive daytime sleepiness, severe memory loss, hallucinations, (where I would sit up and shake hands with people!), sleep paralysis and sleep eating.

Elaine Armstrong from Narcolepsy Ireland attending the European Narcolepsy Network convention 2019.

On Sunday 22nd September Narcolepsy Ireland and Sound Ireland held a kite flying event on Enniscrone beach to raise awareness for narcolepsy and to mark the first World Narcolepsy Day.

22 year old Co. Sligo woman Aoife spoke to Ciara Galvin at the Sligo Champion in the lead up to the first #WorldNarcolepsyDay. She described how her life was turned upside down after being diagnosed with narcolepsy after getting a vaccination for Swine Flu.

A Dublin woman has spoken about living with narcolepsy, a condition that you can’t see but it has a great effect on a person’s life, and how it is treated in Ireland.

Jodie Kelly was 13 years old when she was diagnosed with it, but doctors took a while to diagnose her as she was told it was hormonal and she was ‘becoming a teenager’.

World Narcolepsy Day is dedicated to raising awareness for narcolepsy on a global scale. The condition is a neurological one that impairs the brain’s ability to regulate the sleep – wake cycle. Kristine Beck shares her story of diagnosis with Susan Keogh.

A Co Armagh mum whose life has been devastated by a chronic sleep disorder is bringing everyone in Northern Ireland living with the same condition together on the first ever World Narcolepsy Day.

Today Dylan Black spoke to Cork’s 96fm about living with narcolepsy. Dylan along with others have been raising awareness for World Narcolepsy Day this Sunday 22nd.

Tadgh Kenndy from Sound Ireland spoke to Tommy Marren on MidWest radio to raise awareness for World Narcolepsy Day and to promote the Kite flying event at Enniscrone beach on September 22nd.

Kristine shared her narcolepsy story on the Ryan Tubridy RTE one morning show this week.

In a follow on from Kristine's interview on Tubridy - Naomi Grant spoke with Ryan this morning. Naomi and Dereks daughter Emma developed narcolepsy when she was only 5 years old. Now almost 18 months on, Naomi talks about the impact narcolepsy has had on their lives

Alice Cullen and Elaine Armstrong shared their story on Echo Live this week. Alice and Elaine wanted to raise awareness about narcolepsy and to promote the events taking place to mark the first World Narcolepsy Day on September 22nd.

Narcolepsy Ireland is collaborating with SOUND and coming together with 24 organisations worldwide to establish #WorldNarcolepsyDay. This ground-breaking day, taking place on Sunday, September 22nd, 2019, aims to raise Narcolepsy awareness on a global scale.

This being the largest narcolepsy awareness event to date we wanted to host fun family awareness events throughout Ireland.

Think of your average first year high school student - an oversized blazer they’ll “grow in to ”, an ignorantly large schoolbag that’s bigger than the child themselves and of course, a young face full of confused excitement. That was me at age 11. Like many others, I was in choir, school band, played hockey every week and socialised with my friends at every opportunity.

From today, hidden disability Sunflower Lanyards will be available from the Customer Service Desk in Tesco stores. The Hidden Disabilities Sunflower lanyard is designed to act as a discreet sign that somebody has a hidden disability and may need additional assistance while shopping. 🌻