Lupus Charity Walk 2023
A contribution in the fight against Lupus, APS, scleroderma and MCTD
Nationale vereniging voor mensen met lupus, APS, sclerodermie en MCTD
(National Dutch organisation for people with Lupus, APS, Scleroderma and MCTD)
NVLE is a national organisation for people with Lupus, APS, Scleroderma and MCTD. It was founded in 1980 and has around 2300 members. The organisation exists mostly of volunteers, led by a board. The different diseases have been split into commissions that ensure that information is spread to the relevant members and their interests are looked after. They also have a point of contact in each region inn the Netherlands to ensure personal contact and information points.
NVLE works hard to look after the interests of people with these deseases and contribute to (international) research. They work closely with ReumaNederland and European organisations and support peer to peer contact. You can also reach out to them for medical questions. On their website you can find more information about the symptoms of Lupus, activities of the organisation and you can find the latest news about this disease.
The organisation is being supported by the Medische Adviesraad(MAR) (national medical advice counsel) existing of specialists from hospitals all over the country. They ensure the correctness of the information that is being spread.
By collaborating with national partners such as ReumaNederland and the SRPN (collaborating arthritis organisations in the Netherlands) and international organisations like FESCA (Federation of European Scleroderma Associations) and Lupus Europe we are staying up to date on what is going on internationally and we can put subjects that are relevant to our members on our agenda.
Research and patient participation are important pillars of this organisation. We are a fully fledged partner when it comes to reaserch, outlining guidelines and ensuring care surrounding different types of this disease. The goal of this is to ensure a stronger position to our members. NVLE Goals
- Spreading information and advising people about NVLE related diseases
- Getting involved in research by using patient participation
- Raise awareness for NVLE diseases
- Encouraging and facilitating meetings between peers
- Looking after the interests of all of our members
Information is being spread through
- The quarterly newspaper NVLE Magazine
- Via the website
- Via our socialmedia channels: Facebook, Instagram, Twitter, YouTube
- At conventions in and outside the country, contact days, congresses and symposiums
NVLE is partnered with
- Ieder(in), network of people with limitations of chronic illnesses
- Lupus Europe
- FESCA (Federation of European Scleroderma Associations)
- SRPN (collaborating arthritis organisations in the Netherlands)
- ARCH, medical expertise platform for rare forms of arthritis