PKU Association IE would like to extend huge congratulations to our chairperson Bernadette Sheehan Gilroy, powerful patient advocate and inspirational voice for the #PKU community on her appointment to the IPPOSI board 👏🏻👏🏻👏🏻

The Wexford Carol. Dating back to the 12th century, this is the oldest Irish Christmas song still sung today. Join me here each day between now and Christmas for more Irish festive music 🎄

#steroids #impact #patients please retweet if possible! Vasculitis - In memory of John Mills MBE 💙💚 RAIRDA Versus Arthritis UKIVAS NASS Bristol 🧘🕺💪🧑‍🦽 Myositis UK Vasculitis Foundation ARMA Lupus Research LUPUSUK 💙 Polymyalgia+GCA thank you!

Patient organisation involvement is essential. We are the end-users of these projects and need to be involved in the design and implementation to ensure patient prioritised research and meaningful outputs for those living with the condition. VIA fairvasc.eu/julie-power/

There are only two days left to apply to join our #CitizensJury so that you can have your say on the future use of #genomics in Ireland! Apply here before 9 pm on Wednesday March 23: bit.ly/GenomicsCitize…

A lot of really fantastic work in Vasculitis squeezed into a week, great to be part of such teamwork.

Clinical Features of ANCA-Associated Vasculitis in African American Patients in the United States: A Single-Center Medical Records Review Study - J Clin Rheumatol pubmed.ncbi.nlm.nih.gov/35319534/?utm_…

Living with a #RareDisease can be a lonely thing so please share if you can...

Great speakers at #RDF2022 - the importance of patient involvement in research...

Thank you #RDF2022 for the invite to speak about RainDRoP, lots of collaboration and meaningful networking at the meeting last night.

A new outstanding review on the antibody response to #SARSCoV2 nature.com/articles/s4159… Nature Immunology and the path to variant-proof Covid vaccines

The 24 jurors of the IPPOSI Citizens' Jury on the Future Use of Genomics in Health Care and Research in Ireland are proud to announce their verdict! If you are interested, check out the full findings at bit.ly/IPPOSI22JuryRe… #citizensjury #ppi

From desperation to effective evidence based care in #vasculitis. At the EUVAS Vasculitis course, Prof Peter Merkel's excellent exposition of the trials we should know about.

What great work by the amazing @RosalineAuthor

Very important details from the expert of AAV ⁦Benjamin Terrier⁩ ! #euvas ⁦EULAR⁩ #TurkishRheumatology

#BSR 2022 #Guidelines #Pregnancy 🔥Major Changes from 2016 : ✅RTX,IL6i,ILi,IL17,23i STOP @ conception ✅Mtx<=25mg/wk ✅Lef -NO- in Breastfeeding ✅CYC in exceptional circumstances in Periconception/1st/2nd Trimester ✅Anti TNF in all trimester ✅JAK-i STOP 2 wks Pre-conception

#MedSafetyWeek reporting side effects helps improve medicine development and keeps us and others safe. VIA

Many thanks to Prof Mark Little _ERNRITA UKIVAS VIA for interesting and highly thought-provoking talk at Mater Hospital Trauma MGR this morning. #RareDisease

Neurological Alliance of Ireland Thank you - we are delighted to have so many excellent groups supporting the campaign 22Q11 Ireland BUMBLEance - Children’s Ambulance Service Cystinosis Ireland Huntington's Disease Association of Ireland Irish Haemochromatosis Association Irish MPS society MSA Trust MuscularDystrophyIRE Neurological Alliance of Ireland Edwina Wrenn O'Connell Prader-Willi Ireland RARE Ireland Spina Bifida Hydrocephalus Ireland (SBHI) SMA Ireland @IrelandSwan

We are looking for 8-10 people to join our PPI team in this exciting new research project #vasculitis #autoimmune #PPI