Les martin

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

[Les martin @LesMartin_Ire]

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

https://t.co/KBZq2GZQts

[RTÉ News @rtenews]

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 https://t.co/wPevQVws8c

[President of Ireland @PresidentIRL]

President Michael D. Higgins today officially opened @BordBiaBloom in the Phoenix Park. You can read the President’s address at https://t.co/veAtK8Gzn0

[Les martin @LesMartin_Ire]

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

[Les martin @LesMartin_Ire]

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]

New molecular technology required for SCID and SMA screening – HSE

@RareDiseasesIE @CHI_Ireland @SMAIrelandCom #heelpricktest #rarediseases

https://t.co/mtmFXu73qV

[Rare Diseases Ireland @RareDiseasesIE]

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

[Department of Health @roinnslainte]

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

https://t.co/dArNh4mfwf

[U.S. FDA @US_FDA]

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). https://t.co/mCiEOdBiix

[Screen4Rare @Screen4Rare]

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 👇

https://t.co/oYxJaejMZb

#INSD

[Dr Suja Somanadhan @sujas15]

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

[Rare Diseases Ireland @RareDiseasesIE]

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
https://t.co/Q1zT7IEe6f
Watch 'Looking to the future....' or take a walk in St Stephen's Green or #LightUpForRare

[Les martin @LesMartin_Ire]

Inspirational ! ⁦@AlanFinglas1⁩ ⁦@rareireland⁩ ⁦@RareDiseasesIE⁩ ⁦@DonnellyStephen⁩ https://t.co/bWEDTs5sIs

[Les martin @LesMartin_Ire]

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

[Les martin @LesMartin_Ire]

Watch: New rare disease awareness campaign launched via @RTENews https://t.co/FraCedrmDP

[Irish Medical Times @IMT_latest]

https://t.co/sbOVBIw1nM Funding approved for new conditions to be assessed in heel prick tests this year

[RARE Ireland @rareireland]

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

[Les martin @LesMartin_Ire]

Screen newborns for devastating condition as ‘world’s most expensive therapy’ can spare them fate of my son, father pleads
https://t.co/8AGECpyHnp

[Irish Examiner @irishexaminer]

HSE approves €3m one-off treatment for sufferers of rare and 'devastating' disease https://t.co/Au5jLyxQ9t

[Les martin @LesMartin_Ire]

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

[Les martin @LesMartin_Ire]

'It's their legacy': Father hails approval of MLD drug via @RTENews https://t.co/Q5z8YEwhxx