Les martin (@LesMartin_Ire) profile picture

Les martin

@LesMartin_Ire

Dad to 2 sick boys, rare disease and newborn screening advocate

 Wicklow, Ireland
Joined March 2017
  • Tweets240
  • Following213
  • Followers421
26Media
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RTE news : 'Give us some hope' - Families seek access to rare disease drugs rte.ie/news/primetime/2026/0…
'Give us some hope' - Families seek access to rare disease drugs

'Give us some hope' - Families seek access to rare disease drugs

Families, campaigners and clinicians are calling for more public money to be provided to pay for access to drugs which could help people with rare diseases.

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Les martin retweeted
RTÉ News (@rtenews) profile picture
RTÉ News
@rtenews27 Aug 2025
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/2025/0827…

'Significant scope' to expand newborn screening

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.

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President Michael D. Higgins today officially opened @BordBiaBloom in the Phoenix Park. You can read the President’s address at president.ie/en/media-librar…
Image from President of Ireland (@PresidentIRL)
Image from President of Ireland (@PresidentIRL)
Image from President of Ireland (@PresidentIRL)
Image from President of Ireland (@PresidentIRL)
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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
Image from Les martin (@LesMartin_Ire)
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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
Medical Independent (@med_indonews) profile pictureMedical Independent
@med_indonews18 Apr 2025
New molecular technology required for SCID and SMA screening – HSE @RareDiseasesIE @CHI_Ireland @SMAIrelandCom #heelpricktest #rarediseases medicalindependent.ie/in-the…
New molecular technology required for SCID and SMA screening – HSE - Medical Independent

New molecular technology required for SCID and SMA screening – HSE - Medical Independent

SCID and SMA screening. The introduction of new molecular technology to the National Newborn Bloodspot Screening Laboratory (NNBSL) is...

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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
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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-release/977c…
Image from Department of Health (@roinnslainte)
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Les martin retweeted
U.S. FDA (@FDA) profile picture
U.S. FDA
@FDA18 Mar 2024
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/press-an…
Image from U.S. FDA (@FDA)
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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
Image from Screen4Rare (@Screen4Rare)
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It was so wonderful to reconnect with everyone at the #RareDisease2024 event #Dublin ⁦⁦@rareireland⁩ ⁦@22Q11_Ireland⁩ ⁦@avrilbdaly⁩ ⁦@LesMartin_Ire⁩
Image from Dr Suja Somanadhan (@sujas15)
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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
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Inspirational ! ⁦@AlanFinglas1⁩ ⁦@rareireland⁩ ⁦@RareDiseasesIE⁩ ⁦@DonnellyStephen⁩ youtu.be/WCRCkkWYuiA
Alan Finglas, WORLDSymposium 2024 Patient Advocate Leader Award Recipient

Alan Finglas, WORLDSymposium 2024 Patient Advocate Leader Award Recipient

A heartfelt congratulations to Alan Finglas, the recipient of the e...

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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
Image from Les martin (@LesMartin_Ire)
Image from Les martin (@LesMartin_Ire)
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Watch: New rare disease awareness campaign launched via @RTENews rte.ie/news/health/2024/0207…
Watch: New rare disease awareness campaign launched

Watch: New rare disease awareness campaign launched

A new rare disease awareness campaign has been launched in Dublin.

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

Funding approved to add new conditions to heel prick test this year

Two new conditions will begin being screened for in babies later this year after the Minister for Health announced additional funding. Last year Stephen

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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
Image from RARE Ireland (@rareireland)
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Screen newborns for devastating condition as ‘world’s most expensive therapy’ can spare them fate of my son, father pleads independent.ie/irish-news/sc…
Screen newborns for devastating condition as ‘world’s most expensive therapy’ can spare them fate...

Screen newborns for devastating condition as ‘world’s most expensive therapy’ can spare them fate...

Cathal (6) died of rare condition MLD, but now key therapy that once cost €3m has been approved here and heel-prick test is urged for infants

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

HSE approves €3m one-off treatment for sufferers of rare and 'devastating' disease

MLD, an inability to break down an abnormal build-up of fats, has up to now had fatal consequences

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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
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'It's their legacy': Father hails approval of MLD drug via @RTENews rte.ie/news/2024/0124/142837…
'It's their legacy': Father hails approval of MLD drug

'It's their legacy': Father hails approval of MLD drug

The father of two children with Metachromatic leukodystrophy - or MLD - has said he is very glad to hear that the drug Libmeldy has been approved for use in Ireland.

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