We are raising money in aid of NF Ireland & RARE Ireland, as part of World Rare Disease Day 2025.

Thank you in advance for any contribution, big or small, to this cause that is so worthwhile.

Rare Disease Day is held on the last day of February. The date is chosen because in leap years it is February 29th, the rarest date.

The day aims to raise awareness for unknown or overlooked illnesses, and to improve access to treatment, and medical representation for individuals with rare diseases and their families.

If you’d like to join in, just wear a favourite sports jersey* to the office and donate a few euros on Thursday 27th February.

More information about:

The Neurofibromatosis Association of Ireland: At NF Ireland we 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. We provide support and information on Neurofibromatosis to patients, families, and healthcare providers. Depending on the individual needs of our members we do our very best to provide them with the most up to date information on their condition.

RARE Ireland: Rare Ireland was established in 2017 by Laura Egan and Louise O’Keeffe, both of whom have daughters diagnosed with rare conditions. Laura and Louise met online in 2016, soon after Ella was diagnosed. They formed a friendship and supported each other through what was a very difficult time in their lives. Both families had been handed the name of life altering conditions with no support provided to them.

Families at this time had no option but to reach out to a U.K. organisation, to find the support of other families in Ireland. In 2017 Laura and Louise established a Facebook support group for parents of children and young adults living with rare conditions, which has grown exponentially. Rare Ireland was successful in obtaining national charity status on Rare Diseased Day in February 2022.