'It's their legacy': Father hails approval of MLD drug via @RTENews rte.ie/news/2024/0124…

Thanks to all involved in this effort @DonnellyStephen HSE Ireland Department of Health This is only part of the solution tho… we need newborn screening for MLD for this treatment to be of any use. A great step forward today 👍😉❤️Rare Diseases Ireland IPPOSI

HSE approves €3m one-off treatment for sufferers of rare and 'devastating' disease irishexaminer.com/news/arid-4131…

Screen newborns for devastating condition as ‘world’s most expensive therapy’ can spare them fate of my son, father pleads independent.ie/irish-news/scr…

Stay tuned for more information about a rare disease campaign we are involved in, launching tomorrow, February 7th. Did you know 1 in 17 Irish people are living with a rare disease? #IAmNumber17 Rare Diseases Ireland 22Q11 Ireland KasiaGoljanekWhysall Les martin Anne Micks

imt.ie/news/funding-a… Funding approved for new conditions to be assessed in heel prick tests this year

Yesterday we launched the iamnumber17.ie exhibition and campaign to highlight the fact that 1 in 17 people in Ireland are affected by a rare disease at some point in their lives

Watch: New rare disease awareness campaign launched via @RTENews rte.ie/news/health/20…

What a hero! Alan Finglas collecting his patient advocate leader award this week at world symposium San Diego California for his tireless work in researching a treatment for his sons rare disease. Dylan and Ireland are proud of you! Rare Diseases Ireland RAiN Department of Health

Inspirational ! ⁦Alan Finglas⁩ ⁦RARE Ireland⁩ ⁦Rare Diseases Ireland⁩ ⁦@DonnellyStephen⁩ youtu.be/WCRCkkWYuiA

It's a leap day today - a rare day for #RareDiseasesDay What will you do to show your support for people living with rare disease in Ireland? Check our website rdi.ie/rdd-2024/ Watch 'Looking to the future....' or take a walk in St Stephen's Green or #LightUpForRare

It was so wonderful to reconnect with everyone at the #RareDisease2024 event #Dublin ⁦⁦RARE Ireland⁩ ⁦22Q11 Ireland⁩ ⁦Avril Daly 💚⁩ ⁦Les martin⁩

In 2021, 38,000 newborn babies were diagnosed with a rare disease as a result of #neonatalscreening. On 28 June, we will highlight the importance of #neonatalscreening for those living with a rare disease. Find out more 👇 bit.ly/4bqsHPB #INSD

Today, we approved the first FDA-approved gene therapy indicated for the treatment of children with pre-symptomatic late infantile, pre-symptomatic early juvenile or early symptomatic early juvenile metachromatic leukodystrophy (MLD). fda.gov/news-events/pr…

People diagnosed with a rare disease often require complex and highly specialised care that not only relies on the excellent health care professionals here in Ireland but also benefits from international expertise gov.ie/en/press-relea…

2025 - a year for change! Working with IPPOSI Department of Health HSE Ireland HealthResearchBoard we will soon have a new National Rare Disease Strategy to drive equity in our health service and deliver a better quality of life for all people affected by rare diseases. #StrongerTogether

Shocking failure of Irish state to protect our children.. #newbornscreening saves lives. Constant delays are destroying lives. 5 years of NSAC. No improvement in Ireland. Tragic. Pathetic. Simon Harris TD Micheál Martin Bernard Gloster Sláintecare Jennifer Carroll MacNeill TD

God bless Papa Francesco... And God bless all those who work to protect the little guys❤️ through rare disease research, gene therapy and newborn screening. Fondazione Telethon Department of Health Rare Diseases Ireland RARE Ireland MLD Foundation #PopeFrancis

President Michael D. Higgins today officially opened Bloom in the Phoenix Park. You can read the President’s address at president.ie/en/media-libra…

There is "significant scope" for expanded screening of newborn babies for more rare diseases, according to a new five year National Rare Disease Strategy, published at the Department of Health rte.ie/news/health/20…