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:
- LUPUS UK
- Scleroderma and Raynauds UK (SRUK)
- Vasculitis UK (VUK)
- British Society for Rheumatology (BSR)
- British Society Sjogrens Syndrome (BSSA)
Further information about RAIRDA from the British Society for Rheumatology site
New Patient Representatives on ePAG
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
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
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
The Chairman of Vasculitis UK (John Mills) is a Trustee of Genetic Alliance
Arthritis and Musculoskeletal Alliance (ARMA)
In 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.