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November 2019

Meeting in Killough

November 30, 2019 @ 11:00 am - 1:00 pm

Killough Community Hall, Killough, Co. Down  Tea/coffee and home baked goodies Talk and demonstration by Mary Jane Burns, from Holistic Health and Well being company. Carers and family welcome.

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April 2020

Zoom virtual meeting

April 28, 2020 @ 11:00 am - 1:00 pm

Below are details of how to join our next Zoom meeting on Tuesday morning 11am, on 28th April. We will be joined by Vicky who is the new Rare Kidney Disease Research nurse and she will be talking to us about the PatientMpower app, how to download it, how to use it and why we should use it.  We look forward to as many of you as possible joining us.  To help us with call management, you are welcome to join with video and audio, but when not speaking we would ask you to remain on mute and raise your virtual hand when you need to speak. This helps reduce background noise and ensures everyone is heard.  We will be using a waiting room facility and the password to help keep the call secure.  Julie Power is inviting you to a scheduled Zoom meeting. Topic: Julie Power's Zoom Meeting Time: Apr 28, 2020 11:00 AM Dublin Join Zoom Meeting https://zoom.us/j/94753870893?pwd=S1FlNEFmQnBKdkx6QlluazVXZnBodz09 Meeting ID: 947 5387 0893 Password: 086007 One tap mobile +35316533897,,94753870893#,,#,086007# Ireland +35316533898,,94753870893#,,#,086007# Ireland Dial by your location         +353 1 653 3897 Ireland         +353 1 653 3898 Ireland         +353 6 163 9031 Ireland         +353 1 536 9320 Ireland         +353 1 653 3895 Ireland         +44 208 080 6591 United Kingdom         +44 208 080 6592 United Kingdom         +44 330 088 5830 United Kingdom         +44 131 460 1196 United Kingdom         +44 203 481 5237 United Kingdom         +44 203 481 5240 United Kingdom Meeting ID:…

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May 2020

Zoom meeting

May 5, 2020 @ 11:00 am - 1:00 pm

We hope to be joined by Patient Data Researchers Nathan and Maria again to feedback on last month’s meeting. Below are the links so you can have an idea of where this research is coming from   http://helical-itn.eu/research-projects/esr15/   http://helical-itn.eu/research-projects/ Join Zoom Meeting https://us02web.zoom.us/j/87091950480?pwd=dFhscklVcEtWMlNHVnVOcTNSY1Mrdz09 Meeting ID: 870 9195 0480 Password: 023452 One tap mobile +441314601196,,87091950480#,,1#,023452# United Kingdom +442030512874,,87091950480#,,1#,023452# United Kingdom   Dial by your location         +44 131 460 1196 United Kingdom         +44 203 051 2874 United Kingdom         +44 203 481 5237 United Kingdom         +44 203 481 5240 United Kingdom Meeting ID: 870 9195 0480 Password: 023452 Find your local number: https://us02web.zoom.us/u/klw4IBO8K

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International Vasculitis Day

May 15, 2020

International Vasculitis Day is coming up on Friday.  We wanted to have a fun walk and picnic but now, we will have virtual walks and maybe a picnic in our own homes. Please get in touch this evening if you are interested. Thank you.

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October 2020

2020 Vasculitis Ireland Awareness Conference

October 9, 2020 @ 6:30 pm - October 10, 2020 @ 3:00 pm

This year due to COVID-19 restrictions we have decided to have our Annual Conference Online via a zoom call presentation. We will be holding the Conference over 2 days:   Friday October 9th 2020: 6.30 to 8.30pm  & Saturday October 10th 2020: 11am to 3pm. We would like to extend our invitation to all health care professionals and patients.  We have Specialist Vasculitis Consultants coming to talk to us about the different types of Vasculitis,with opportunities to ask questions, we have people talking about the lived experience, and updates on treatments and research. This year we also have some Art Therapy and Music Therapy introductions by qualified therapists. Our programme is below and attached here to this email. We would appreciate it if you are interested in attending if you could let us know by return email or registration on eventbrite at this link if you wish: https://2020vasculitisireland.eventbrite.co.uk    The conference this year is free of charge. We will send on details closer to the date of how you can make a donation to our charity if you wish to.) Please do save the date and we look forward to seeing you there online, Also we have been asked to send a reminder of the Decompress Study, studying COVID-19 in Vasculitis: With COVID-19 cases now on the rise, if you do contact the virus please contact the Research Nurse at this email address: rkdnurse@tcd.ie to take part in this important study. We kindly ask people to print out the flyer attached and hand it in at their GP practices/Clinics so that if they should contract COVID19, they will be immediately able to contact this study. Video Link, Prof. Mark Little discussion DeCOmPRESS Study. If you require any further information, please do not hesitate to…

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October 2021

AGM and Update on COVID 19 vaccine effectiveness in Vasculitis

October 27, 2021 @ 7:00 pm - 8:00 pm

  Prof Neil Basu of the University of Glasgow has confirmed he will present up to date information on the effectiveness of COVID vaccines for people with Vasculitis.   There will be a short AGM afterwards, which we hope you will stay for. You can find the details, including a comprehensive report from the trustees, in our Public folder at hereunder AGMs.   The meeting will be online Join Zoom Meeting https://us02web.zoom.us/j/89339959431?pwd=eU5YS0JEc051YVRFYU4wNlBFaFVMdz09 Meeting ID: 893 3995 9431 Passcode: 525792                      

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January 2022

Debunked Workshop – how to tell fact from fiction

January 18, 2022 @ 7:00 am - 8:30 pm

This workshop will help people identify misleading or misrepresented information and provide some simple techniques to separate fact from fiction. This is very important in the current times with so many versions of facts circulating. Anyone with interest in this are is very welcome to join us To book your free place, please register using the link below   https://www.eventbrite.ie/e/215644948847

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Fatigue Workshop Follow up

January 22, 2022 @ 10:30 am - 11:30 am

Join Niamh Malone in the follow up to her September workshop, and learn tips to manage Fatigue. Everyone welcome. Join Zoom Meeting https://us02web.zoom.us/j/87386592121?pwd=bS9tZTBZck5Ba2V6cHZpNFhvaGJ5Zz09 Meeting ID: 873 8659 2121 Passcode: 983650

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April 2022

International Vasculitis Patient Conference

April 2, 2022 @ 12:30 pm - April 3, 2022 @ 1:00 pm
Clayton Hotel, Burling, Burlington Road
Dublin, Ireland
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Join us for our hybrid International Vasculitis Patient Conference in Dublin on 2nd and 3rd April 2022. Our event will precede the International Vasculitis and ANCA Symposium on 3rd-6th April. We will have world renown International speakers, researchers and be joined by our communities from all over the world. We have got funding from the Hospital Saturday Fund and The European Joint Patient Rare Disease Fund and are delighted to inform you that this event will be free to attend in person or online. For more details follow our Facebook page and social media as we confirm our plans. Register at the link below and we would love to see you all at our first big International Patient event.

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April 2023

What would we want from an app for Kidney health

April 3, 2023 @ 7:00 pm - 8:00 pm

 Dr Sinead Stoneman from Cork University Hospital will present her ideas for an app she is designing called 'mykidneyhealth'.  She would appreciate our ideas on what would be useful, what would we use and any feedback we can offer. As always there will be time to chat and catch up. All will be welcome. Mykidneyhealth infographic

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