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Autumn Meetings' Downloads

posted 11 Nov 2019, 08:42 by Richard Eastoe

Thanks to everyone who came along to our recent meetings in York and Gomersal, I hope you found them interesting and useful.

As promised, I’ve uploaded Dr Lucy Turner’s and Catherine Short’s presentations to the website. I’ve also uploaded the website links from my news items on current vasculitis research and flu vaccination advice.

They're in the support group section at the bottom of the Useful Documents page.

Autumn 2019 Meetings

posted 6 Sep 2019, 14:20 by Richard Eastoe

We have two meetings booked for Autumn.

The first will be a return to our North Yorkshire venue in Huntington, near York on Sunday the 13th of October.

The second will be at our regular venue in Gomersal in West Yorkshire on Sunday the 20th of October.

See our meetings page here for more details.

Spring 2019 Meetings

posted 7 Feb 2019, 12:59 by Richard Eastoe   [ updated 7 Feb 2019, 13:08 ]

We’ve booked two spring meetings this year in March.

This first will be a new venue in Driffield in East Yorkshire on Sunday the 17th of March. Hopefully this will be relatively close for folk coming from Scarborough, Hull and York.

The second will be at our regular venue in Gomersal in West Yorkshire on Sunday the 24th of March.

See our meetings page here for more details.

East Yorkshire 2018 Meeting

posted 28 Sep 2018, 08:35 by Richard Eastoe   [ updated 27 Oct 2018, 04:18 ]

We’ve quickly scheduled another meeting for Sunday the 18th of November at 2:00pm. It will be held at St Barnabas Church Hall, Swanland, to the West of Hull.

See our meetings page here for details.

ANCA Associated Vasculitis Patient Survey

posted 27 Jul 2018, 09:00 by Richard Eastoe   [ updated 27 Jul 2018, 09:07 ]

Survey on the Withdrawal of Maintenance Therapy for ANCA Associated Vasculitis and SLE 

Professors Lorraine Harper and Alan Salama are interested in studying people with ANCA Associated Vasculitis (AAV) and Systemic Lupus Erythematosus (SLE) to look at the effect of the withdrawal of immunosuppression on rates of infection versus the risks of relapse.

The study they are proposing would be aimed at patients who they identify as being at low risk of relapse and who would currently expect to be having conversations with their clinicians about reducing and coming off their medication.

As well as gaining a better understanding of the risks of infection versus relapse, the study also wants to see if they can understand what it is that allows some patients to remain in remission whilst others cannot. This could ultimately lead to a more customised and individual treatment for patients.

In order to find out what patients might think about this, Alan and Lorraine have set up an online questionnaire for those of you with AAV or SLE to fill in.



So, if you have either  :

     Wegener’s (Granulomatosis with Polyangiitis – GPA)
or
     Microscopic Polyangiitis (MPA)
or
     Churg Straus Syndrome (Eosinophilic Granulomatosis with Polyangiitis – EGPA)
or
     Lupus (SLE)

I’d definitely recommend that you have a look and have your say. It’s a great opportunity for us as patients to have a direct input into research into our condition. Potentially making a difference for future patients, if not ourselves.

Here’s the link to the online survey : https://www.surveymonkey.co.uk/r/THXPGFJ

Fundraising for Vasculitis UK

posted 23 Jul 2018, 07:59 by Richard Eastoe

For those of you who knew Lynne Jacques, who sadly died earlier in the year :

Gordon Brown, a friend of Lynne’s son Joel, will be running in the Great North Run in September, to raise funds for Vasculitis UK. See the link below for details of Gordon’s Just Giving donation page.




Leeds BRC Biologics Presentation 2/8/18

posted 23 Jul 2018, 07:38 by Richard Eastoe   [ updated 23 Jul 2018, 07:46 ]

The Leeds Biomedical Research Centre (BRC) at Chapel Allerton have a Patient and Public Involvement event coming up in August that some of you might be interested in. They’ll be talking about the use of biologic drugs (such as Rituximab) in treating connective tissue and autoimmune diseases like vasculitis.

The event is on Thursday the 2nd of August and runs from 10:45am until about 1:00pm. A buffet lunch will be provided free of charge.

See the Leeds BRC website here for more details :

http://leedsbrc.nihr.ac.uk/event/ask-the-researcher-biologics-and-your-body-how-what-why-and-when/

Or contact Gwyn Cracknell for more information :

G.T.Cracknell@leeds.ac.uk

Support Group Meetings for Spring 2018

posted 14 Mar 2018, 10:15 by Richard Eastoe   [ updated 14 Mar 2018, 10:29 ]

We've just booked the next two Spring support group meetings. One for York on Sunday the 15th of April and one for Gomersal in West Yorkshire on Sunday the 22nd of April.

See our meetings page here for details.


Scarborough Rare Diseases Meeting

posted 22 Feb 2018, 09:18 by Richard Eastoe   [ updated 22 Feb 2018, 09:22 ]

Ruth Newton, the specialist rheumatology nurse at Scarborough Hospital, has arranged another rare disease patient support meeting for Saturday the 10th of March between 10:00 am and 12:00 noon.

The meeting will be held in The Friends Meeting House, Woodlands Drive, Scarborough, YO12 5QZ. This is just down the road from the hospital on the right hand side, past the traffic lights.

Family and friends are welcome and light refreshments will be provided at the meeting.
 
Ruth will be talking about the whys and wherefores of blood tests. She’ll be happy to answer any questions too.

Please let Ruth know if you will be coming along but you can also just turn up on the day.

See Google Maps for directions.

Email : ruth.newton@york.nhs.uk

Or phone : 01723 385 058

Scarborough Rare Diseases Meeting

posted 14 Aug 2017, 12:42 by Richard Eastoe

Ruth Newton, the specialist rheumatology nurse at Scarborough Hospital, has arranged another rare disease patient support meeting for Saturday the 16th of September between 10:00 am and 12:00 noon.

The meeting will be held in the Blue Conference Room at Scarborough Hospital, Woodlands Drive, Scarborough, YO12 6QL. The room is located in the North Wing of the hospital, on the ground floor.

Family and friends are welcome and light refreshments will be provided at the meeting. The tea and coffee will be provided by the hospital and so donations towards the cost would be appreciated.
 
Ruth has arranged for Dr Shanali Perera to come and talk about Art and Healing. Dr Perera has vasculitis and there’s an item here about when she spoke at the recent Vasculitis UK education day in Manchester :

http://www.vasculitis.org.uk/news/news-shanali-perera

Please let Ruth know if you will be coming along but you can also just turn up on the day.

See Google Maps for directions.

Email : ruth.newton@york.nhs.uk

Or phone : 01723 385 058

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