Advocacy group representing those affected by Spinal Muscular Atrophy. Implementing SMA in the heel prick test and improved SMA treatments are top priorities.
Ireland
Joined September 2018
- Tweets734
- Following770
- Followers444
- Likes557
SMA Ireland retweeted
@MDI_Ireland are launching their campaign for equal access to life-saving treatments for 20 people with Spinal Muscularity Atrophy currently precluded under HSE rules. #SMAtreatmentsForAll
SMA Ireland retweeted
Congratulations @ILMIreland on timely whitepaper "A manifesto for change". Key takeaway is that more disabled people should have confidence to put themselves forward for leadership positions. At @IrishWheelchair 24 AGM, Board seat left uncontested. Be the change you want to see.
SMA Ireland retweeted
Today we visit Leinster House, calling on Oireachtas members to support our call for urgent action to expand the newborn heel prick test screening services provided to babies born in Ireland. Stay tuned to our socials and visit rdi.ie to learn more #GetRareAware
SMA Ireland retweeted
This week Scholar Rock colleagues attended @MDAorg Clinical & Scientific Conference, where we hosted the "Muscle Matters in SMA" lunch symposium and presented posters highlighting 36-month TOPAZ trial data and the ongoing disease burden for patients living with SMA.
SMA Ireland retweeted
Here @TomClonan makes a powerful case for a No vote on the Care Referendum at a recent @AAC_West meeting in Galway
SMA Ireland retweeted
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
SMA Ireland retweeted
We're lighting up Ireland for #RareDiseaaeDay on February 29th
Rare Disease Day is 1 month away! 📣
Join the movement: #LightUpForRare and #ShareYourColours!
Download our materials available in multiple languages to maximise our global impact: rarediseaseday.org/downloads…
Quote tweet this and tell us what you're doing for Rare Disease Day!
ALT Background with pink and green waves as well as the Rare Disease Day logo. Text reads: "1 month until Rare Disease Day. Follow for more. rarediseaseday.org."
SMA Ireland retweeted
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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SMA Ireland retweeted
Many in rare disease community will know Anne Lawlor. Today her tireless advocacy for her daughter, those living with 22Q11 deletion syndrome and all living with rare diseases has been acknowledged with a HSE Excellence Award for the 22Q clinic @CHIatCrumlin
BIG CONGRATS👏👏👏
SMA Ireland retweeted
Check out our new InformationHub for everything you need to know about your child going to hospital and finding supports.
Visit InformationHub.Childreninhos…
SMA Ireland retweeted
Great to see our Advocacy Lead, Portia Thorman, on Sky News raising awareness about SMA and the need for early treatment intervention! 📣✨
SMA Ireland retweeted
We're delighted to announce the launch of our InformationHub, a new digital resource to support families with the information they need when their child requires hospital care.
To access our InformationHub, visit Informationhub.childreninhos… – at Dublin City, Ireland
SMA Ireland retweeted
#OnAir on @NewstalkFM:
@ShaneBeattyNews takes the nation’s 1st look at the papers on #BreakfastBriefing
Flooding @cgerardnolan
/ Heel Prick Test @SMAIrelandCom
And from 6:30am @JoeBLynam has the latest #BreakfastBusiness news
#NTBK
SMA Ireland retweeted
It is essential for 🇪🇺 to work to ensure access to neonatal screening and new treatments for children born and living with rare diseases.
Today I had the opportunity to discuss this with several associations and patient advocates.
#HealthUnion
SMA Ireland retweeted
Great interview now on @RTERadio1 about a newly qualified primary school teacher who just happens to be a wheelchair user. She is highlighting how rare it is for a wheelchair user to follow this path as a career!
SMA Ireland retweeted
A €5 test could have given my baby a better future, says Irish mum
@SMAIrelandCom
thesun.ie/health/10948298/5-…
SMA Ireland retweeted
Donnacha was diagnosed with SMA – a form of motor neurone disease that affects children – in 2021, at three months
irishmirror.ie/lifestyle/par…
SMA Ireland retweeted
1/2 We're incredibly proud of our #Dublin team for winning Best Media Relations Campaign and Highly Commended for Best Public Affairs Campaign at the @PRCA_Ireland #PRAwards23 for our @NovartisIreland @SMAIrelandCom 'Every day counts with SMA' campaign
SMA Ireland retweeted
@DonnellyStephen @CMOIreland @roinnslainte
We agree - much of the burden for evidence generation in support of #NBS should be performed at EU level. Almost 4 years of NSAC & only ADA-SCID has been added to panel @HSELive. Ireland now ranks 23rd in Europe. In 2020 we were 20th.
Newborn screening for rare diseases can help affected persons avoid costly and difficult diagnosis journeys.
The #EU should promote cross-border collaboration in the field of newborn screening for rare diseases as a way to reduce healthcare system expenditure.
