LUPUS EUROPE needs you!

 

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LUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together.  To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups.

There is no need to be a Lupus Expert, all that is required is the desire to contribute, and a fair (not perfect!) command of English, as well as a good internet connection 😊

Participating in a work group is great fun, and serves a real need. It will typically mean about 6 “skype calls” per year, and some work at your pace in between. We are seeking a 2-year commitment to allow for some continuity. If your workgroup requires one-shot travel within Europe, it will be fully funded. Active participation in workgroups might open up the opportunity for more travel, meetings and discoveries…

So why don’t YOU apply?

We are seeking:

3 to 4 Members for the Communication Work Group to improve overall communication – making it smoother and more regular – increasing our social media presence and LUPUS EUROPE’s visibility. The deliverables include creation and ideas but also ongoing support, which can be shared but requires consistent and planned messages showing LUPUS EUROPE’s work. Platforms include FB, twitter, the blog, youtube…  There is also an opportunity to beef up our media presence for events such as World Lupus Day and at busier times such as around the convention. You like communication and have design or communication skills? Apply to join the COMMUNICATIONS Group.

3 to 4 members for the “Kick Lupus” Work Group to bring the Kick Lupus concept alive throughout the year by developing and rolling out initiatives that make people move, fight, kick, share and take the lead to push lupus further away. You want to help people with lupus feel better and more energised, and have creative ideas and the energy to implement them? Apply to join the KICK LUPUS Group.

3 to 4 members for the “Message tracks” Work Group to develop clear communication objectives and messages that will be offered for re-use by our members. What is our message to doctors? To newly diagnosed patients? To the general public? To politicians? Working together and using the methodology presented at the end of the Milan convention, we will seek to develop message tracks, and toolkits to make deployment easier. You have ideas on what our communication priorities should be and knowledge about lupus to bring arguments to support them? You would like to put thoughts in a structured and impactful format? Apply to join the “MESSAGE TRACKS” group.

5 to 7 members for the Patient Expert Group: This call is for people living with lupus that have already significant experience and understanding of the disease mechanism, who have been (or are ready to invest in being) trained as EULAR PRP, EUPATI, Eurordis or other similar training for patients supporting research. If you are interested in contributing through closer connections with the Research community, bringing the patients voice to the design, interpretation and on-going operation of research by industry academics, apply to join the PATIENT EXPERT GROUP.

Up to 10 YOUNG people with lupus for a one-shot YOUTH PANEL, to be held in May 2018. If you are aged between 18 to 28, this is a great opportunity to meet other people that live with lupus around Europe, while raising your voice so that we better understand what it really means to live with lupus as a young person today. The 2 days will be built around interactive sessions, designed to share views, concerns, aspirations, requests… It will be led by people who have lupus themselves. Interested? Apply for the YOUTH PANEL!

1 person with skills in video editing that could support our desire to be more active in this space, turning raw footage of short testimonies into attractive videos for web usage.

APPLY NOW by sending a message to secretariat@lupus-europe.org specifying which work group(s) you would like to join (giving a first and second choice), your name, address and phone number, a brief background on you and a few words explaining why you are interested. Applications will close by FEBRUARY 28 latest (earlier if great candidates are identified for all open positions).

LUPUS EUROPE becomes first associate member of SLEuro

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LUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society

We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society.

SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to SLE and related syndromes. Its members are individuals and institutions of any nationality who share its goals. Members must work in the scientific sector, have proven education and training, and practise a professional activity as researchers, clinicians, nurses or healthcare professionals.

The Society is building a community of clinicians and researchers interested in SLE at an international level, with special focus on engaging younger physicians in the field, promoting and coordinating the organisation of research and educational meetings on SLE and related syndromes, promoting equal access to the best standards of care for SLE patients across Europe, and facilitating research projects and clinical trials in SLE.

LUPUS EUROPE is a strong supporter of SLEuro whose goals are fully aligned with LUPUS EUROPE’s vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus”. Over a number of years, we have appreciated the relentless efforts of the academics and researchers at the origin of SLEuro. We cannot thank them enough for their dedication to Lupus Research, the building-up of a dialogue with lupus patient groups, and their every day care for all people living with lupus in  Europe. To all lupus doctors, we say a big THANK YOU, from the depth of our hearts.
We are proud and honoured to be Associate Members of SLEuro, a connection which symbolises and strengthens the partnership between self-help organisations for lupus patients in Europe and the Medical Community fighting against lupus.