IFXS

Promoting awareness of Fragile X Syndrome (FXS) and Fragile X associated disorders (FXTAS & FXPOI).

[Kirsten Johnson, FRSA @DrKirstenJ]

Fantastic that @genenames has modified the name of FMR1 to Fragile X messenger ribonucleoprotein 1.
We hope all researchers, clinicians, etc., will begin to use this new terminology: https://t.co/LcrnxeiiRb
@FragileXIndia @FragileXAus @FragileXIreland @SindromeXFragil

[IFXS @FragileXIreland]

Join us from anywhere in the world to raise awareness for #fragilex. #awakenyoursenses with #fragileXmasswim. Expert advice on supporting adults @ageingwithid #fragilex & #dementia https://t.co/akeD4p4AIi

[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.

[IFXS @FragileXIreland]

Join us to raise awareness for #fragilex from anywhere in the world for a Christmas swim #awakenyoursenses #fragilexmasswim

[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.

[National Intellectual Disability Memory Service @NidmsIrl]

Excellent informative presentations in this mornings #nidmsmasterclass highlighting the importance of promoting biological, psychological and social elements of brain health & have fun doing it! @MarianneFallon8 @EimMcGlinchey @SPKennelly @ageingwithID @MccarrmMary

[Rare Disease Day @rarediseaseday]

Today is #RareDiseaseDay!

There are over 6⃣0⃣0⃣0⃣ rare diseases

🌏 300 million people live with a rare disease accross the world

Rare diseases currently affect 3.5% - 5.9% of the worldwide population👨‍👩‍👧‍👦

Learn more about what is a #raredisease

👉https://t.co/4axpDU3ofy

[Massimiliano (Massi) Bianchi @mb470102]

Rare is many, Rare is strong, Rare is proud 🌈!

👉🏻 Support #RareDiseaseDay2021

@ITA_CDKL5_IVLC @Cdkl5ireland @FRAXAresearch @CmtResearch @FragileXIreland

[Ulysses Neuroscience @UlyssesNeuro]

Rare is many, Rare is strong, Rare is proud!

Ulysses Neuroscience Ltd supports #RareDiseaseDay2021

#Hope #Love #Cure #CDD #CDKL5 #CMT #TogetherWeCan

[IFXS @FragileXIreland]

Rare is many
Rare is strong
Rare is proud
#FragileX #RareDisorder
#RareDiseaseDay #RareDiseaseDay2021

[Rare Disease Day @rarediseaseday]

📢 NEW! The official #RareDiseaseDay video is out NOW

🎉Watch the 6 real life stories and be inspired to join the 2021 campaign.

👥 Share this post with your followers using this hashtag #RareDiseaseDay

[Kirsten Johnson, FRSA @DrKirstenJ]

Great Zoom meeting with my international colleagues at the European Fragile X Network ⁦@fragilexuk⁩ ⁦@FragileXIreland⁩ ⁦@XFragilMad⁩ ⁦@FrenchFragileX⁩

[National Intellectual Disability Memory Service @NidmsIrl]

Understanding and diagnosing #dementia in people with an #intellectualdisability The first in a series of educational masterclasses starts today at 2pm with @MccarrmMary @ageingwithID @TCD_SNM Still time to register https://t.co/cPQsYpcqHX

[Kirsten Johnson, FRSA @DrKirstenJ]

A privilege to chair the European Fragile X Network meeting this morning & hear of all the amazing work being done to raise awareness of #FragileX, supporting those with FXS and FXPAC https://t.co/U3fm40Xdfp @fragilexuk @XFragilMad @FrenchFragileX @XFragilCyL @fragielex

[National Intellectual Disability Memory Service @NidmsIrl]

Delighted to announce a series of masterclasses responding to the care needs of people @ageingwithID and #dementia from 12 Nov to 8 Dec Register now https://t.co/cPQsYpcqHX

[National Intellectual Disability Memory Service @NidmsIrl]

Our inaugural webinar ‘Dementia in People with ID: Turning hope into service transformation’, jointly organised by @Ageingwithid, Tallaght University Hospital #TUHWorkingTogether & @docdss to celebrate the development of @nidmsirl can now be viewed https://t.co/Y4R1jhmJNC

[National Intellectual Disability Memory Service @NidmsIrl]

Join us for a webinar 'Dementia in People with ID - Turning Hope into Service Transformation on Monday, 21st September
@11am
to mark World Alzheimer's Day. More info: https://t.co/o88qXHJtbI Register here: https://t.co/CHl7LAxr5O #WorldAlzheimersMonth #ageingwithID

[FRAXA Research @FRAXAresearch]

Help NIH understand the impacts of COVID-19 on the rare disease community by filling out this survey.
Link ⬇️
https://t.co/QCtWHrsGs0

#FragileX #FragileXSyndrome #FXResearch #Research #Community #RareDisease

[Ulysses Neuroscience @UlyssesNeuro]

This week our UK colleagues celebrate #NationalEpilepsyWeek

Our work on #CDKL5 Deficiency Disorder and #FXS involves research into the underlying causes of seizures in these disorders, along with the impact epilepsy has on the lives of the patients with these disorders.

[FutureNeuro Centre @Futureneuro_ie]

We are delighted to partner with @UlyssesNeuro on this exciting new project to help us to better understand Fragile X Syndrome @FragileXIreland

[Ulysses Neuroscience @UlyssesNeuro]

The April #newsletter is out now!

Read inside:
✅ Words from our President and CEO. @mb470102
✅ News from the lab.
✅ patient & Family Focus: #Fragilexsyndrome
✅ Updates from Trinity College Dublin.

Read here and make sure to subscribe 👉 https://t.co/NiyiAYx7rA