Following consultation with the Sjögren’s community in Ireland, Sjögren’s Ireland hosted a webinar to mark World Sjögren’s Day 2023 on the theme of ‘Traditional, complementary and alternative medicines‘.
Dr Michelle Flood, RCSI, discussed opportunities for patients and members of the public to participate in education and research.
Deirdre Collins and Grainne Tynan, co-Founders of Sjögrens Ireland, provided a history of their advocacy group, updates on their initiatives to date and information on future events.
Niamh Dillon, RCSI, discussed the important role of pharmacists for those living with Sjögren’s in addition to conventional over-the-counter therapies to support Sjögren’s management. She also discussed drug schemes, managing multiple medications, adverse effects and the importance of communication.
Dr James Barlow took an evidence based approach to discuss the importance of understanding the quality, safety and efficacy of complementary & alternative medicines (CAM) and how they compare to conventional medicines.
In collaboration with Sjögrens patient advocates we have created some important healthcare resources.
On July 19th 2022 we successfully launched the inaugural Sjögrens Syndrome Knowledge Exchange Event lead by Dr Joan Ní Gabhann-Dromgoole and Sjögrens Ireland with support from the RCSI Public Patient Involvement (PPI) team.
The aim of the event was to support and empower those living with Sjögrens Syndrome to become their own advocates. Scientists from the Ocular Immunology Research Group RCSI, experts in public patient involvement and Sjögrens patient advocates provided updates on their partnership and discussed with attendees how to improve Sjögrens Research in Ireland.
This event was launched by Prof Tracy Robson, – Professor & Head of School of Pharmacy and Biomolecular Science, RCSI University of Medicine and Health Sciences. The researcher-patient co-designed webinar also included two guest speakers, Dr Sabina Brennan, who discussed brain fog, and Dr Eleanor O’Sullivan who discussed dental care for those living with Sjögrens. It also showcased the findings from patient informed research studies conducted in 2021 and highlight the advances that have been made as a result of scientist-patient partnerships.
Below is a link to a recording of this event.
Below is a link to a recording of the inaugural Sjögrens Syndrome information webinar that was organised in 2021.
This recording features key information regarding: Ophthalmology, Dental care, Dermatology, Womens Health, Rheumatology, public patient involvement (PPI) in research and current Sjögrens research from the Ocular Immunology Research Group in RCSI. This event featured Sjogrens patient advocate Deirdre Collins who shared her disease journey with attendees.
When you click on the link you will be directed to input your name and email address. Press register and the video will play.