Covid-19 For Patients With Vasculitis

UK and Ireland Vasculitis Society (UKIVAS). The UKIVAS (UK and Ireland Vasculitis Rare Disease Group) Registry is a collaboration between patients, clinicians and scientists to create the first comprehensive database of vasculitis patients in the UK and Ireland. For current information on COVID19 and vaccines please click on link.

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NEXT meeting online Monday 28th November 7pm  –

Let’s talk about Avacopan

The National Centre for Pharmacoeconomics (NCPE), Ireland  has recently received a Health Technology Assessment (HTA) for Avacopan (Tavneos®), in conjunction with a rituximab or cyclophosphamide regimen, for the treatment of adult patients with severe, active granulomatosis with polyangiitis(GPA) or microscopic polyangiitis(MPA).

As part of the NCPE HTA process, they would welcome a submission from VIA. The NCPE submit the patient organisation submission along with the HTA report to the HSE Drugs Group.

So if you want to be included in this discussion, or maybe have been part of the clinical trial here. please join us online on  Monday 28th November at 7pm  to talk about Avacopan, pros and cons. 

https://us02web.zoom.us/j/81443440976?pwd=a1VCNHJsS3ArdTN0alJGNGtZalZPQT09

Meeting ID: 814 4344 0976

Passcode: 213103

Save the dates for future online meetings, 5th December,(Vasculitis PatientMPower app), 9th January, (RNID – Talk about hearing difficulties and how to cope),  21st January (Fatigue Management Workshop), 6th February (Dr David Jayne – Fertility and Vasculitis) and more to come. We look forward to seeing you, you will be very welcome.

 

What is Vasculitis?

Vasculitis is a family of rare diseases that can affect people of all ages.

Vasculitis means inflammation of the blood vessels, arteries, veins or capillaries. When such inflammation occurs, it causes changes in the walls of blood vessels, such as weakening and narrowing that can progress to the point of blood vessel blockage.

A result of Vasculitis is that the tissues and organs supplied by affected blood vessels do not get enough blood. This can cause organ and tissue damage.

The purpose of Vasculitis Ireland Awareness is to offer support and information to patients and family members where needed.

Charity Number  NIC105731

RCN20204769   

HMRC Number XT34911 

Registered on Orphanet

Vasculitis International

Member of Vasculitis International

 

 

    Vasculitis Ireland Awareness is a non-profit organisation…

      We rely solely on volunteers and charitable donations in order for our organisation to operate, help us to help others!

VIA is a support group set up for patients of all the Vasculitis diseases, their carers and interested Healthcare Professionals in Ireland.

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In most cases, the cause of Vasculitis is unknown. A combination of factors can cause the inflammatory process to be set in motion. Vasculitis is an autoimmune disease and for reasons that are not yet understood, these diseases occur when the body mistakenly...Learn More

We hold regular meetings online for like minded people to come together and discuss their conditions, treatments and offer support, in a relaxed environment. Patients and all family welcome. Contact us for more information, times and locations...Learn More

 

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