Huntington's Disease Association of Ireland
@HDAI_ieHDAI RCN 20025656. Sharing news on Huntingtons Disease /connecting to the international HD community. RTs not endorsements. https://t.co/z0BAD0VUeS https://t.co/pPoXkLELx2
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@HDReach
@naiireland
@HDSA
@UCLHD
@EuroHuntington
@HuntingtonSG
@HDBuzzFeed
@HDA_tweeting
@HuntingtonSC
@hdafricaorg
@ABIIreland
@EHDN_News
@HDYOFeed
@hdfcures
@ScottishHD
Government pledges specialist support as over 700 people in Ireland battle Huntington's Disease independent.ie/irish-news/new…
NAI are doing a final call out to anyone who is caring for someone who is living with a neurological condition. Have your voice heard before the CLOSING DATE on November 15th. Please share your experiences and complete the survey at tinyurl.com/mr7ush3x #brainhealth
@Tony_Wilkes_CPA is living with a neurological condition and is calling on all election candidates for Cork to make brain health a priority. Almost 1 in 6 people are living in Ireland with a neurological condition. PLEDGE YOUR SUPPORT at tinyurl.com/2pt7t84h #GE2024
Great overview of the #Huntingtonsdisease event in Strasbourg #ehdn2024 #enrollhd #Huntingtonsdisease @EANeurology @movedisorder @HDAI_ie
The November issue of EHDN News is online! Highlights include coverage of EHDN & Enroll-HD 2024 and an interview with the amazing Anne Rosser. #HuntingtonsDisease #HDCommunity #RareDisease #ClinicalResearch PM or email newsletter@euro-hd.net with your comments and views!
Disability inclusion isn’t optional. It’s a priority. #PrioritiseDisability this General Election. For more on our campaign to #PrioritiseDisability: bit.ly/4f1rpvW Candidates sign our Disability Pledge: bit.ly/3YpDFk3 Our manifesto: bit.ly/3AfrmgT
NEW: Oxford researchers have identified a key biochemical mechanism relevant to the development of Huntington’s Disease. This discovery opens up the possibility of studying the disease before its clinical onset and eventually stopping its progression ⬇️ ox.ac.uk/news/2024-10-2…
We're proud to announce Dr. Zanna Voysey as a 2024 HDBuzz Prize winner! She shares a new study that details racial disparities in HD care and research. Addressing this could improve the lives of people living with HD in the here-and-now. #medical #hdsa #… ift.tt/PeTy0Ab
Here is the link for the show with Wes Michael of @rarepatientvoic blogtalkradio.com/help4hd/2024/1… You can also listen to it on iHeart, iTunes, Spotify, and the Help 4 HD International website. Just type in "Help 4 HD Live!". @Help4HDI
Great opportunity to hear the latest updates on HD clinical trials #EHDN #Huntingtonsdisease #clinicaltrials #research #neurodegeneration @EuroHuntington @EHDN_News @HDAI_ie
🙌 Join us for the upcoming webinar about the latest developments in ongoing clinical trials, moderated by professor Åsa Petersén, HD clinician and researcher, who will start the session with an introduction. Register here 🔗 bit.ly/3Y4Bwsv
Greater awareness of the safeguarding needs of people who may self-neglect due to neurodegenerative or mental health illness is crucial. Also the impact on carers and children .
@sarahmdonnelly1 looks at complex sensitive issue of carer harm. Noting that language is problematic, awareness is poor and there are competing rights at play.
Closure of many smaller, local nursing homes - report via @RTENews rte.ie/news/ireland/2…
“The #neuromapping project phase two research puts the focus on service users age services providers The sad reality is that there has historically been underfunding. Services must be designed around the needs of the user and their families.”@AnneRabbitte
Joe from @EopdIe is living with Parkinson's and remarks that equal services are needed in the community and people with neurological conditions should not always have to fight for their care #Neuromapping
Dr Nicola O' Malley speaking at today's Neuro Mapping Project 2 launch. She summaries some feedback received from service users and people with neurological conditions across Ireland #Neuromapping @DisabilityFed @HSELive
Ireland is too dependent on other country’s science and technology. It desperately needs to raise its embarrassingly low investment in universities and research if we are to maintain our wealth. It could disappear in a flash. This is urgent @Paschald @tcdTBSI @tcddublin
Irish unis are behind due to poor staff/student ratio and infrastructure. Ireland is last in education funding in OECD out of 34 ‘fell most in Ireland Latvia and Mexico’. Can’t continue if Ireland is to be competitive. We are letting a generation down. oecd.org/en/publication…
An excellent #Podcast with Dr Seán O'Dowd reminding us how we can all make informed lifestyle choices for better #BrainHealth. Physical activity, social engagement and cognitive stimulation boosts our brain. Well worth a listen @Hsehealth
Our latest #TalkingHealthandWellbeing #Podcast is focused on #BrainHealth with Dr. Seán O'Dowd Consultant Neurologist in @TUH_Tallaght and with @TurleyNoreen they discuss #neuroplasticity, #lifestylefactors, #socialengagement #Dementia #mentalhealth. Available on all podcast…
Celebrate International Podcast Day today by doing 2 things, register for our webinar event about how podcasts can help: bit.ly/4gA7aXi and have a look back through our catalogue of 70 #podcasts on a variety of areas of #HealthandWellbeing: hsepodcasts.podbean.com…
RESEARCH UPDATE - Have you heard of @loqus23? Established in 2019, LoQus23 Therapeutics has established a platform of assays and a small molecule series of MutSα and MutSβ inhibitors which are therapeutically relevant in up to 30 triplet repeat diseases, including HD.
NAI member groups are key to the implementation of the Neurorehabilitation Strategy: NAI Executive Director Magdalen Rogers, tells the Disability Mayters Committee at the October 2nd meeting where we were joined by member groups @MSIRELAND and @an_saol
We welcome commitment in #budget2025 to fund #raredisease strategy development, implementation of strategy, newborn screening, genetics & genomics, organ transplant and new medicines. First time in memory that rare diseases are called out in budget. Devil is in the detail now...
We'll ensure patients continue to have access to new medicines, we're committed to making things better for those with rare diseases and ensure we continue to enhance organ donation.
HDF's Research Spotlight webinar "Conference recap with @HDBuzzFeed: What was the buzz at #HD2024?" is available now - hdfoundation.org/hd2024-recap/ Thank you to our webinar sponsor, @neurocrine ! #curehd #huntingtonsdisease @HDYOFeed @AmericanBrainCo @HDSA @HDA_tweeting
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Who to follow
-
HD Reach
@HDReach -
Neurological Alliance of Ireland
@naiireland -
HDSA
@HDSA -
UCL Huntington’s Disease Centre
@UCLHD -
European Huntington Association
@EuroHuntington -
HuntingtonStudyGroup
@HuntingtonSG -
HDBuzz
@HDBuzzFeed -
Huntington's Disease Association
@HDA_tweeting -
@huntingtonsc
@HuntingtonSC -
Huntington Disease Africa
@hdafricaorg -
Acquired Brain Injury Ireland
@ABIIreland -
EHDN News
@EHDN_News -
HDYO
@HDYOFeed -
HDF
@hdfcures -
Scottish Huntington's Association
@ScottishHD
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