About Vasculitis UK

Overview

About Vasculitis UK

Vasculitis UK has been a Registered UK Charity since 1992. Charity No. 1019983

Everything is to be found here about Vasculitis UK, the charity: our aims, goals and objectives, the history, the people who run it, our finances, how you can join and how you can support and be involved in running Vasculitis UK. There is a section here on fundraising and on setting up a local vasculitis support group.

The aims of Vasculitis UK are:

  • To support those suffering from vasculitis diseases and their families by providing information and advice.
  • To inform and educate those with vasculitis about their illness so that they are empowered to take greater control of it.
  • To work with other organisations and medical professionals to improve the recognition, diagnosis and treatment of vasculitis diseases.
  • To raise awareness of vasculitis disease among medical professionals and the general population.
  • To enable vasculitis sufferers to contact others with vasculitis.
  • To encourage and support the formation and development of local vasculitis support groups.
  • To support research into the causes and effects of vasculitis and into improvements in the diagnosis of vasculitis and into treatment of people suffering from different types of vasculitis.

Vasculitis UK Affiliated Memberships

New Patient Representatives on ePAG

20 May 2016

John Mills, chairman of Vasculitis UK, has been elected as one of the 5 patient representatives (ePAG) for rare immunological and autoimmune diseases in Europe.

EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation in the decision-making processes around European Reference Network

Please follow these links for further details

http://www.eurordis.org/content/newly-elected-epag-patient-representatives?platform=hootsuite

http://www.eurordis.org/sites/default/files/epag-table-for-website.pdf

Eurordis

Vasculitis UK are proud to announce that we became a member of EURORDIS in February 2016

EURORDIS is the voice for rare disease patients in Europe, a non-governmental patient-driven alliance of patient organisations representing 705 rare disease patient organisations in 63 countries.

They are the voice of 30 million people affected by rare diseases throughout Europe.

EURORDIS' mission is to build a strong European community of patient organisations and people living with rare diseases, to be their voice at the European level.

Genetic Alliance UK

Genetic AllianceVasculitis UK has been a member of Genetic Alliance since 2010.

Genetic Alliance is the national charity of over 150 patient organisations supporting all those affected by genetic conditions

The aim of Genetic Alliance is to improve the lives of people affected by genetic conditions by ensuring that high qyaklity services and information are available to all who need them.

In April 2014, 72 member charities, including Vasculitis UK, endorsed the Genetic Alliance UK "Patient Charter" initiative "Patient perspective and priorities on NICE's evaluation of highly specialised technologies" Patient Charter

The Chairman of Vasculitis UK (John Mills) is a Trustee of Genetic Alliance


Arthritis and Musculoskeletal Alliance (ARMA)

ARMAIn 2013 Vasculitis UK become a member of Arthritis and Musculoskeletal Alliance (or ARMA). ARMA is a charitable umbrella organisation providing a collective voice for the arthritis and musculoskeletal community in the UK. Their vision is of an effective, unified musculoskeletal community working together to improve the lives of people with musculoskeletal disorders (MSDs).

ARMA’s aim is to transform the quality of life of people with musculoskeletal disorders. This is achieved by shaping policy and best practice in partnership with its member organisations. This objective sits comfortably with the efforts at Vasculitis UK.

ARMA has 40 member organisations, ranging from specialised support groups for rare diseases to major research charities and national professional bodies and they work inclusively with their members and external partners to deliver improvements to services for people with all forms of musculoskeletal disorders.

Vasculitis UK is delighted to be a member of ARMA and will be looking for opportunities to promote the welfare of vasculitis patients.

Vasculitis Patient Symposium 2015

The Vasculitis 2015 Workshop was a multidisciplinary and multiprofessional conference, and importantly included contributions from patients. The workshop gave all 500+ medical professionals who attended, the opportunity to hear about the latest advances in the field of vasculitis, and to network with other healthcare professionals and scientists. This Vasculitis Workshop is a bi-annual event and the next workshop in 2017 will be held in Japan.

Dr David Jayne - The importance of Peer to Peer Support

Dr Mike Venning with Kate Gilbert Chairman of PMRGCA

John Mills Chairman of Vasculitis UK - Medical History

Kimberly-LCTF, Joyce-VF, Susan and John-VUK - Vasculitis 2015

John -VUK, Peter-Netherlands Vasculitis Support - Vasculitis 2015

John Mills: Chairman of Vasculitis UK and Patient Representative

John Mills: Retired Dentist - Chairman of Vasculitis UK - Vasculitis Patient

John Mills: Chairman of Vasculitis UK - On holiday, still working for Vasculitis UK (shaded from the sun)

Vasculitis Patient Symposium 2015

This is the first time such an event has been run alongside the international medical conference. This was a unique opportunity for people with vasculitis and their family members to meet others from around the UK to discuss problems, share experiences and interact with some of the top vasculitis experts from around the world.

Jane, Clarry, Christine, John, Sue, Gareth and Susan "Team V" Volunteers on the day

Introductions with John Grant and Dr Prete Lanyon

Delegates making themselves comfortable

A session in progress

Group photos of all the delegates who attended the Patient Symposium

Winston the Vasculits Awareness Bear supporting the Symposium

Dave from "Innov8 Conference Services" filming the day

eurordis logo

News

Vasculitis UK Poster Award

23 Oct 2017

A Vasculitis UK Poster has been nominated as best overall design at the Cambridge Rare Disease Summi

New Vasculitis UK 2017 Christmas Card

05 Oct 2017

New card for 2017

Rare Autoimmune Rheumatic Diseases Alliance

27 Sep 2017

New group formed

Events

Beds, Bucks and Herts: lunch

02 Dec 2017

Saturday lunch in Cambridgeshire

Chrismas Bazaar in Plymouth

02 Dec 2017

VUK seasonal fundraiser

Christmas Tree Festival in the Peak District

08 Dec 2017

VUK tree part of festival in Bakewell

East Midlands Vasculitis Support Christmas lunch/party

09 Dec 2017

Book now for festive meal

Merseyside , Cheshire and North Wales Support Meeting

12 Dec 2017

Meeting and Buffet in Liverpool

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