LUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and to build on some of our skills.
The conference was opened by Ms. Marianne Thijsen, the EU commissionaire for employment and Social affairs. She highlighted the commission’s progress on defining “European pillars of social rights”, 20 statements that should guide future EU Social policy. Three of those statements are particularly relevant as anchors to our work : (i) Everyone has the right to timely access to affordable, preventive and curative health care of quality; (ii) Access to safe work environment, fit for everyone; (iii) Right to inclusion for people with disabilities (including income support that ensures living in dignity, services that enable to participate in the labour market and in society, and a work environment adapted to their needs).

Another key statement that she made is that while some would like healthcare to be left entirely up to each country, she disagrees: “Arthritis does not know borders. Pain does not ask for your passport. There is a need to tackle health together: We can learn from each other, there should be no 2nd class citizens in Europe”. This is both the recognition of a threat, and a very nice statement on the need for EU health policy.

The conference then mostly evolved around the EULAR campaign “Don’t Delay, Connect Today”. If you are not yet familiar with this European wide campaign, see more on this link and offer your full support to this important initiative. Early diagnosis is a key priority, in Lupus and other RMD’s and can save a lot of personal hardship thanks to early treatment. The delegates very largely voted for a continuation of this campaign for at least another 2 years, so we can reach a maximum number of people.

Finally, a fun souvenir starring our chair, Jeanette Andersen who is reminding us of the importance of exercise.

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).