The “Get Rare Aware” campaign is urging the government to expand newborn screening. NBS is vital for the early detection and treatment of many rare diseases. The launch starts with a webinar for Dublin/midlands areas Register on this link

eventbrite.ie/e/get-rare-awa…

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

📢 Spotlight: Daniel Mikula, Project Manager for the Rare Disease Research Catalyst Consortium (RDCat)! ✨ He supports Irish-based healthcare professionals, researchers and patients working in collaboration to build rare disease excellence and increase rare disease research.

We'll see you there! Join us in celebrating International Clinical Trials Day! 🥳 #ICTD

Just one more day to go for early-bird prices for @riwc24. Don't miss out!

🔗fightingblindness.ie/register-for-t…

Retina International | Fighting Blindness

Do you want to learn more about Health Technology Assessment (HTA)? 🙋

EUCAPA offers three training programmes designed to enable people living with rare diseases and their representatives to fully participate in HTAs!

➡️ Learn more: eucapa.eu

Today we celebrate Health and Social Care Professionals Day #HSCPDay2024 and extend our thanks to the 21,000 HSCPs delivering care to patients in Ireland. A special 'Thank you' from ILFA Ireland to all those caring for lung fibrosis patients. You are valued and your care counts!

Clinical Trials Day 2024 will take place on May 17th. Do you have any questions you would like to ask our clinical research staff on the day?
#clinicaltrialsday #clinicalresearch UCD Medicine

📢 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!

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

One month to go until we host our annual International Clinical Trials Day events!
Join UCD Clinical Research Centre at one of our participating sites ⬇️
#ICTD24 #ClinicalTrials #LearnAboutClinicalTrials

Women in Rare 👏

Catch our CEO Virginie Bros-Facer and President Avril Daly 💚 in the latest edition of RARE Revolution Magazine breaking down why this is a pivotal moment for our community and what we are doing about it!✊

Page 81 ➡️ bit.ly/WomenInRARE-Eu…

We have a really exciting webinar coming up next month on #CareCoordination for #RareDisease ✨ An excellent line-up planned! All to be revealed during the week 🤫 Save the date! EURORDIS-Rare Diseases Europe Genetic Alliance UK 22Q11 Ireland Dr Suja Somanadhan Prof AJ McKnight ✨ Registration link to follow 🧬☔️

Rare Disease Day at NIH 2024 may have passed, but our commitment to the community continues! Read an NIH Record story about the inspiring journeys of #RareDiseases patients & caregivers, scientific discoveries, impactful community programs & more: go.nih.gov/GWW2ee1 #RDDNIH

📢 Spotlight: Sarah Forde, Research Data and Regulatory Affairs Officer for RDCTN. ✨Sarah advises collaborators, providing guidance on data management and regulatory compliance. With a background in bioinformatic research, she manages databases and publishes reports for RDCTN.

📢 Calling patient groups in the #RareDiseases community! Share your resources to help other patient group leaders get started with research. Selected resources will be included on the NCATS Toolkit website. Learn how to submit: go.nih.gov/ehRz9yQ 1/2

📢 Spotlight: Suzanne McCormack, Network Manager for RDCTN! ✨ She expertly oversees RDCTN governance, supports members and promotes our mission globally. With expertise in organizational development and patient advocacy, she is a driving force in health research collaboration.

⭐️Publication alert 🚨

Effective interventions to increase representation of under-served groups in #randomisedtrials in UK & Ireland: a scoping literature review

#TrialsMethodolology Frances Shiely
[version 1; peer review: awaiting peer review]

💻openresearch.nihr.ac.uk/articles/4-12/…

📢 Spotlight: Prof Cormac McCarthy, co-lead of RDCTN! ✨A respiratory consultant and Irish lead on IMPALA-2 (aPAP clinical trial) he established a National Cystic Lung Disease Referral Centre for Ireland, collaborates with irishthoracicsociety and runs a Rare Lung Disease Clinic St Vincent's University Hospital (SVUH)

We're excited to join forces with UCD Medicine & partners to pioneer the launch of the Rare Disease Research Catalyst Consortium (RDCat) project. Together we're advancing research, diagnosis & treatment options for individuals affected by rare diseases #RDCat #RareDiseaseResearch