@iscp want to impact on the Health Budget for 2025 This survey captures lived experience with HSE Ireland assessing health needs of OLDER PERSONS in medical dental & homecare The MORE people @iscp hear from the more PRECISE demands will be
DCU AFU

docs.google.com/forms/d/e/1FAI…

#GetRareAware Take Action on getrareaware.ie
Let's expand Newborn Bloodspot Screening services - more commonly called the 'heel prick test'. Screening provides early diagnosis & access to support and treatment. Listen back to our first webinar. youtube.com/watch?v=T0oH4v…

REMINDER! We need and appreciate your generosity to support our patient advocacy familial support and research and clinic support Thank you VhiWMM #VhiWMM #Dystonia

Rare Diseases Ireland has launched its 2024 Get Rare Aware campaign to bring together politicians medical experts and people living with rare diseases including in Dublin
Rare Diseases Ireland #GetRareAware
Dublin People Steve Petherbridge🇮🇪🇪🇺🇺🇳 #Dublin
dublinpeople.com/news/health/ar…

Like, comment and share if you found this post helpful. You can help us spread awareness about dystonia with these simple actions!

#dystonia #dystonia awareness #movementdisorder #braindisorder #fightfordystonia #dystonia fighter #cervicaldystonia #blepharospasm

#TakeActionNow #GetRareAware #RareDiseases
👇

Delighted to join Rare Diseases Ireland at the launch of the #Getrareaware campaign launch at Leinster House 🙌 Dystonia Ireland

Michael J Fox Is on the 2024 TIME100 List

The Michael J. Fox Foundation michaeljfox.org collaborate with Bachmann-Strauss in #Dystonia Research “to grow the base of scientists aiming to understand the causes of and contributors to dystonia”

time.com/6963869/michae…

Join us at 12.30pm today for our online event for people in HSE region Dublin and Midlands to support our call for urgent action to address the inadequate newborn heel prick test screening services provided in Ireland. Register at: tinyurl.com/ycxpt8uz #GetRareAware

It’s still
#Parkinsons AwarenessMonth I still haven’t had a reasonable explanation as to why #Parkinsons Disease is still with us after 200 years, yet the #COVID_19 virus lasted only 1yr?🥹What would it take to get the same result in 1 year for PD? Parkinson's Europe 🌷 The Dublin Neurological Institute

We are preparing an Access Strategy - the first of its kind for Fingal and have launched a survey to gather public insight. Share your personal experience of accessing services at consult.fingal.ie/en/content/pub…

📢 Spotlight: Cassandra Dinius, PPI Liaison Officer at RDCTN! ✨She collaborates with patients, families, and the public to shape rare disease research. Cassandra is dual appointed at @HRCI, strategically utilizing their expertise to embed lived experience in all our activities!

Well done Steve Petherbridge🇮🇪🇪🇺🇺🇳
Dystonia Ireland

#dystonia is the 3rd most common #neurological incurable movement disorder.

#GetRareAware Campaign launch by Rare Diseases Ireland at The Dáil Dystonia Ireland represented by Steve Petherbridge
Photos include: Minister Anne Rabbitte TD TD Fergus O'Dowd Fergus O'Dowd TD Pádraig O'Sullivan TD Vicky McGrath CEO Rare Diseases Ireland
#Dystonia
Irish Times Health+

Did you know Ireland currently screens newborn babies for fewer diseases than 75% of other European countries? Support our 2024 Get Rare Aware campaign by visiting getrareaware.ie #GetRareAware

Dystonia Ireland are pleased to be part of the #GetRareAware campaign launched by Rare Diseases Ireland The photoshoot for the launch is TODAY Wed 17th Apr at 11.30 outside The Dáil
See getrareaware.ie and rdi.ie

The latest edition of DYSTONIA ADVOCATE the newsletter of Dystonia Ireland
dystonia.ie/wp-content/upl…

Dystonia Europe Neurological Alliance of Ireland Dystonia Research #Dystonia #Dystonia Awareness @neurology #MovementDisorders St Vincent's University Hospital (SVUH) The Dublin Neurological Institute Rare Diseases Ireland Health Research Charities Ireland - HRCI Rare Diseases Clinical Research Network Rare Disease Clinical Trial Network, Ireland

The VHI Womens Mini Marathon is on Sun 2 June Please join us and take on the 10k challenge walk/run to support us We urgently need funds to keep Dystonia Ireland in operation and continue to fund our Research Projects PLEASE CONTACT MARIA See attached
@vhiWMM #VhiWMM #Dystonia

The first webinar for the #GetRareAware campaign by Rare Diseases Ireland is on Thurs Apr 18 at 12.30 - webinars are  being run by health region but everyone is of course welcome to attend Registration link: bit.ly/GRA-Dublin-Mid…

Revance to Present New DAXXIFY® Data at the American Academy of Neurology 2024 Annual Meeting -
#Dystonia #Dystonia Awareness #Daxxify
businesswire.com/news/home/2024…