RAIRDA
Vasculitis UK are proud to announce that we became founder members of the RAIRDA Alliance in 2016.
The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) has been formed in order to improve the quality of life of people living with rare autoimmune rheumatic diseases.
The partners of the Alliance are:
Further information about RAIRDA from the British Society for Rheumatology site to Further information about RAIRDA from https://rairda.org/
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
Vasculitis 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
ERN RITA / ePags
What are ERNs?
European Reference Networks (ERNs) bring together medical experts from across Europe to help diagnose and treat rare and complex diseases. They allow specialists to share knowledge and discuss cases so patients benefit from the best expertise, wherever they live.
What are ePAGs?
European Patient Advocacy Groups (ePAGs) give patients a voice within each ERN. Patient advocates work with clinicians and researchers to make sure patient needs are at the centre of the network’s activities.
What is ERN-RITA?
ERN-RITA focuses on rare immunological diseases, including autoimmune, autoinflammatory, primary immunodeficiency and paediatric rheumatic conditions.
What is RIPAG?
RIPAG is ERN-RITA’s patient advisory group, bringing together patient representatives from all four disease areas.
Our involvement
Vasculitis UK was first represented in ERN-RITA by John Mills (2018). Since 2019, Zoi Anastasa has served as our patient representative on the RIPAG board.
Vasculitis International
Our mission is “to encourage and support international collaboration between vasculitis patient advocacy groups (VPAGs)”. Where Vasculitis Patient Advocacy Groups (VPAGs) focus on supporting the individual patient and their caregivers we as Vasculitis International focus on helping VPAGs.
Vasculitis UK has been part of Vasculitis International since its foundation in 2019 and is an active member of the organisation.