Les martin

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…

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

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. @Fondaz_Telethon @roinnslainte @RareDiseasesIE @rareireland @MLDfoundation #PopeFrancis

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. @SimonHarrisTD @MichealMartinTD @BernardGloster @slaintecare @CarrollJennifer

2025 - a year for change! Working with @IPPOSI @roinnslainte @HSELive @hrbireland 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

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…

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…

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

It was so wonderful to reconnect with everyone at the #RareDisease2024 event #Dublin ⁦⁦@rareireland⁩ ⁦@22Q11_Ireland⁩ ⁦@avrilbdaly⁩ ⁦@LesMartin_Ire⁩

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

Inspirational ! ⁦@AlanFinglas1⁩ ⁦@rareireland⁩ ⁦@RareDiseasesIE⁩ ⁦@DonnellyStephen⁩ youtu.be/WCRCkkWYuiA

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! @RareDiseasesIE @RAiNAllIreland @roinnslainte

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

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

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 @RareDiseasesIE @22Q11_Ireland @KasiaWhysall @LesMartin_Ire @annedmicks

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…

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

Thanks to all involved in this effort @DonnellyStephen @HSELive @roinnslainte 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 👍😉❤️@RareDiseasesIE @IPPOSI

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

We had a busy couple of days this week. Tues we were @RAiNAllIreland international symposium. It was a lovely day of networking and hearing the voices of #PLWRD. Wed we were at @LeinsterHouse supporting #GetRareAware the #RareCommunity is growing, we are #StrongerTogether