jor

Strategic Development Officer, Trinity Centre for Ageing & Intellectual Disability. Fragile X International Board member & Chair of Communications #fragilex

[Rare Disease Day @rarediseaseday]

🎉 Today marks the first day of Rare Disease Awareness Month 2023!

📣 Join us this month to raise awareness for the 300 million people living with a rare disease worldwide!

👉 Find out how you can get involved: https://t.co/93MyugM5Zx

[jor @applersj]

New born screening for #fragilex so important to enable the right supports to be put in place from birth. Excellent podcast about diagnostic oddyssey from @FraXI_FragileX Chair @DrKirstenJ

[EURORDIS-Rare Diseases Europe @eurordis]

🚨 Ep. 2 of #EurordisRareOnAir! 🚨

In this episode, @gulcingumus1 and @DrKirstenJ discuss the challenge diagnosis poses for many people living with a rare disease and the quality of life that Newborn Screening would provide to so many.

Listen now 🎧 https://t.co/e7w03rrQwQ

[Fragile X International (FraXI) @FraXI_FragileX]

Today for #internationalfragilexawarenessday excited to launch and share our new video starring families from many countries internationally sharing what it is like to live with #FragileXSyndrome https://t.co/PPLV5Fx3z1 #XX2022 #fragilextraordinary

[Fragile X International (FraXI) @FraXI_FragileX]

#internationalfragilexawarenessday #XX2022 #fragilextraordinary

[jor @applersj]

#anxiety and hyperarousal can be challenging for #fragilex. Important to understand the biology that can cause it and the environmental triggers Tomorrow is #internationalfragilexawarenessday #XX2022 #fragilextraordinary

[Fragile X International (FraXI) @FraXI_FragileX]

Tomorrow is #internationalfragilexawarenessday #XX2022 Today's 'Did you know' highlights importance of understanding the biology that can cause anxiety and hyperarousal in #fragilexsyndrome

[Fragile X International (FraXI) @FraXI_FragileX]

Day 8 of 10 days of sharing knowledge about #fragilex What is FXPOI?

[jor @applersj]

Focusing on strengths of people with #fragilex and #intellectualdisability is so important for the amazing contribution they bring to the workplace, the community and society. 3 days to go until #internationalfragilexawarenessday Today's fact on #fragilex focus is on strengths

[Fragile X International (FraXI) @FraXI_FragileX]

Have you heard of FXTAS? Fragile X International is sharing 10 days of facts about all things #fragilex leading to #internationalfragilexawarenessday on 10 October #XX2022 to raise understanding and awareness #genetics

[Fragile X International (FraXI) @FraXI_FragileX]

Counting down to #internationalfragilexawarenessday on 10th October. Today's 'Did you know' is about being social #XX2022 #fragilex

[Fragile X International (FraXI) @FraXI_FragileX]

#internationalfragilexawarenessday #XX2022 on 10th October. Today's 'Did you know' is about the prevalence of #fragilex #genetics

[jor @applersj]

Counting down to #internationalfragilexawarenessday on 10th October #XX2022 Increasing understanding about all things #fragilex and #Genetics

[Fragile X International (FraXI) @FraXI_FragileX]

10 October is International Fragile X Awareness Day. Fragile X International (FraXI) aims to increase understanding and awareness about #fragilex Today's 'Did you know' fact is about testing for #fragilexsyndrome #internationalfragilexawarenessday

[Fragile X International (FraXI) @FraXI_FragileX]

10 days to go until #internationalfragilexawarenessday on 10 October #XX2022 when we will celebrate all things #fragilextraordinary. @FraXI_FragileX will share a #fragilex fact each day between now and 10 Oct- Did you know?

[National Intellectual Disability Memory Service @NidmsIrl]

Congratulations to @MccarrmMary, Executive Director of the National Intellectual Disability Memory Service, on being selected to the honor of Fellow of IASSIDD for your outstanding contribution and leadership in the field of #intellectualdisabilities

[Rare Diseases Ireland @RareDiseasesIE]

Please join us for the next Rare Disease Forum on June 8th. The topic is #research, a critically important aspect of care for people living with rare conditions in Ireland. All welcome!
@rareireland @IrelandSwan @DisabilityFed @hrbireland @CarersIreland

[Trinity Centre for Ageing & ID @ageingwithID]

Over 73% of @IdsTilda participants reported low levels of activity. 🏃‍♀️🏃‍♂️

Online @OpTranRTE Leader Una Coates & her friends from @StewartsCare & @SOIreland joined us for a physical activity class at @tcdsports. 🥇

Video & slideshow from the day 📹📸⬇️
https://t.co/xIvci0mzBd

[jor @applersj]

Thanks to everyone who braved the elements on Christmas morning for #fragilexmasswim #awakenyoursenses A huge thanks for the gorgeous banner with info about #FragileX from Flags Ireland https://t.co/9JYsJz1ODh & the lovely tshirts from @ClubFirst6

[Fragile X Society, UK @fragilexuk]

If you, or your loved one, are feeling anxious about shopping or using public transport, our Fragile X Assistance Cards may help - a reminder that they're available from our online shop:

https://t.co/aHxuh3W0LE

[jor @applersj]

#awakenyoursenses #fragileXmasswim Join @fragilexireland on Xmas morning for a dip/paddle. Like we will experience the cold sensation of the sea at #fragileXmasswim, individuals with #fragilex have to live with sensory issues every day.

[jor @applersj]

#fragilex #fragilexmasswim #Awakenyoursenses

[jor @applersj]

#awakenyoursenses with a dip or paddle in the sea and join @fragilexireland #fragilexmasswim Portmarnock  beach or from your nearest beach to raise awareness about Fragile X Syndrome on Xmas morning (or any day from Christmas Eve to New Year’s Day).

[jor @applersj]

#awakenyoursenses with a dip or paddle in the sea and join @fragilexireland #fragilexmasswim Portmarnock  beach or from your nearest beach to raise awareness about Fragile X Syndrome on Xmas morning (or any day from Christmas Eve to New Year’s Day).