Rare Ireland

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Rare Ireland

Support organisation for families affected by rare conditions in Ireland
Email:[email protected]

03/06/2026

Some things are hard to put into words.

But sometimes, someone says it exactly right.

"Sometimes support isn’t about having all the answers. It’s about knowing someone is there, understands, and cares."

If this resonates with you, share it. Someone in your life might need to see it today.

31/05/2026

Best of luck to everyone doing the VHI women’s Mini Marathon today, especially everyone walking/running for Rare Ireland. We hope all you have a lovely day and thank you for choosing to fundraise for Rare Ireland. All funds raised will go directly to supporting families of children with rare conditions.

29/05/2026

Support can look like a lot of things.

It can be a doctor who finally listened. A stranger in an online group who said "me too." A friend who showed up without being asked.

For people living with rare diseases, support isn't always easy to find: but when it arrives, it changes everything.

We want to hear from you. 👇

What does support mean to you, or to someone you love?

Drop a word, a sentence, or a story in the comments. We read every single one.

27/05/2026

Laura and Louise started Rare Ireland because they lived the reality that so many of you know too well: the searching, the uncertainty, the feeling of being invisible in a system that wasn't designed for you.

This is our story. But it's also yours.

If someone in your life needs to hear this today, share it with them.

25/05/2026

Most people have never heard the term "rare disease" until the day it changes their life.

1 in 17 people in Ireland are living with a rare disease right now.

That's someone in your family. Someone in your workplace. Someone standing next to you in the queue this morning.

At Rare Ireland, our mission is to make sure they are seen, heard, and supported. Follow along. 💙

07/05/2026

Every year in Ireland children die or suffer irreversible neurological damage because they don’t have access to the screening to make a timely diagnosis or the treatment to save or improve their lives.

Tonight’s episode of Prime Time Investigates will be addressing the difficulties families face in accessing treatments for rare diseases. Tune in at 9:30 to hear the stories of rare disease parents, patients and advocates and the heartbreaking reality of not having access to life changing treatments and screening to diagnose these conditions.

14/04/2026

Yesterday we welcomed the addition of two more conditions on the newborn screening programme. Although this addition is supported by the rare disease community, progress in this area is slow and we screen for significantly less conditions than some other European countries. Newborn screening saves children’s lives and every child deserves the same chance of early diagnosis and treatment.

What is newborn screening? This is the bloodspot test or heelprick test carried out on babies in the first 3-5 days of life.

Why is newborn screening important? Newborn screening in Ireland tests for 11 serious rare diseases in babies. These conditions all have approved treatment plans but early detection is vital. Delayed diagnosis leads to delayed treatment which cause irreversible neurological damage or death in children.

What conditions are tested for in Ireland?

1. Cystic Fibrosis (CF)
2. Congenital Hypothyroidism (CHT)
3. Phenylketonuria (PKU)
4. Classical Galactosaemia (C Gal)
5. Glutaric Aciduria Type 1 (GA1)
6. Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCADD)
7. Homocystinuria (HCU)
8. Maple Syrup Urine Disease (MSUD)
9. Adenosine Deaminase Deficiency Severe Combined Immunodeficiency (ADA-SCID)
10. Severe Combined Immunodeficiency (SCID)
11. Spinal Muscular Atrophy (SMA)

Expanding newborn screening: Ireland currently screens for 11 conditions while Italy screens for 40+. Expanding newborn screening will equalise access to screening, include more conditions, ensure timely treatments and care pathways for families.

The diagnostic odyssey refers to the long journey rare disease patients experience in receiving an accurate diagnosis. The average time it takes to receive a diagnosis is 5 years. Enabling diagnosis of more rare diseases at birth will significantly reduce the diagnostic odyssey but more importantly it’ll save the lives of more children every year in Ireland.

10/04/2026

We had a lovely afternoon at our music therapy workshop. Music therapy is proven to reduce anxiety, enhance communication, and improve motor skills. Thank you to everyone that came along, to Casey Harris for facilitating the workshop and Barnhall Rugby Club , Lexlip, co. Kildare for giving us their premises for the afternoon.

08/04/2026

As our Co Founder Louise has made the difficult decision to step back from the daily operations of the charity, we would like to take this opportunity to wish her all the best and thank her for the time and energy she dedicated to Rare Ireland.

Rare Ireland started with 2 families and now supports more than 2K. Without any previous experience we built a support network to be proud of. Over the past 9 years Louise has supported many families and formed lasting friendships with many of us.

Louise will be missed by our board, committee and many members she has supported but will always be part of our rare community. On behalf of us all we wish her the very best in her future endeavours.

Address

Athlone

Telephone

+353894220228

Website

http://www.rareireland.ie/

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