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Dear LUPUS EUROPE Friends,

Here is another issue of our LUPUS EUROPE NEWSFLASH, with both news about past events, like the creation of our Patient Advisory Network, or Laura’s participation to the EPF Patient Advocate Summit… and coming ones, with the convention 2018 in which we have been able to secure an outstanding inspirational speaker...
This is also the time also to thank Lupus UK and its Marathon runners for their effort, running for LUPUS EUROPE, and to remind everyone that LUPUS EUROPE is there for you, so let us know how we can help…

Good reading


LUPUS EUROPE Convention is approaching…

In 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed.
The theme for this year’s convention will be “Restoring Hope”. Lupus is not always easy to deal with, and we can often feel down; when a flare is painfully reminding us of the disease, when a clinical trial fails once again, when we feel tired and misunderstood… As leaders in patient groups, we also regularly receive calls for help from people that have just been diagnosed, or who face depression. It is so easy to lose hope when you have lupus….
Yet there are many reasons to keep hope: the search for new medication is more active than ever, patients’ involvement in handling their own disease is growing, lupus awareness is growing, legislation in support of people with disabilities (visible or not) is progressing, patient support groups are bringing hope to their members in many different ways…
The theme of hope is what we will explore at our next convention, the multifaceted aspects of restoring hope, and the many reasons not to give up, and continue the fight: it is not hopeless!
Our program will give a very large place to interactions between participants, with 9 different workshops on various topics centered on the “restoring hope” theme. Participants will be empowered to define and select the themes that they have most interest for, and to progress it throughout the convention.

On Saturday, the opening address will be given by Professor Houssiau, chair of the European Lupus Society, and in the afternoon,  we will review together the progress made by LUPUS EUROPE since the last convention on the various elements of its strategic plan. Sunday’s highlight will be a session from Torben Wiese, inspirational speaker, which will help us find in ourselves the many reasons to stay hopeful in the difficult times. Monday, Nele Cayers (Chair of PARE) will address the group, closing the convention theme, and the “Message tracks” workgroup will lead a workshop to improve our communication with Journalists…

One of the key sessions of our convention is the council, during which we review past year’s results and accounts, define the next year’s objective, debate key questions with regards to the charity, and elect new trustees. The organization is living thanks to its members and their commitment. This year’ the creation of work-groups has allowed more than 30 people to take an active role in key projects, such as the creation of the Patient Advisory network or the Communication, Message tracks and kick lupus work-groups. Many thanks to our members that have made this broader involvement possible. It is essential for LUPUS EUROPE’s long term development that such engagement continues year after year. Based on the input from our council members, we do hope to create new work-groups next year, so as to allow even more people to get active and lead with us the fight against the disease and the support to the people affected.

Another London Marathon success
Thanks to LUPUS UK’s support, Lupus Europe raised again significant funds this year during the  London marathon. This year,  no less than £6,837 has been raised by our runners. Many thanks to Jordan Hobbs, Mark Alford, Sean Cavanagh, Tony Henebery, Stuart Johnson and Lee Smith for their wonderful 42.195 km run, and to Janine Hirsh and Lupus UK for the organisation of this annual event.

The Patient Advisory Network (PAN) is born
People with lupus need new and better treatments to improve their long-term prognoses and their quality of life. We need a better understanding of the disease and its medical, social and psychological impact, so that effective plans can be put in place. LUPUS EUROPE strongly believes that such research can only take place with the active participation of people with lupus, and of patient organisations.
After consultation with Doctors and Scientists engaged in research, other patient groups and representatives of the pharmaceutical industry engaged in Lupus related research, we have concluded that  LUPUS EUROPE should establish a “Patient Advisory” Group.

On June 30,2018, we were very happy to celebrate the birth of the Patient Advisory Network (PAN). The first event of the PAN has been a week end of training, with the support of Dr Chiara Tani (University of Pisa) and Mitchell Silva (EUPATI Belgium)… immediately followed by putting this to use as participants then engaged in dialogue with industry partners on July 2. Since, some of our PAN members have engaged in Advisory Boards, patient advocacy actions, research and projects.
The Patient Advisory Network is a team of 10 to 15 trained and energized experienced patients, living with lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus, including EULAR task forces, SLEuro initiatives and ERN Research. They structurally connect the patient community to the scientific community. They provide prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plans.
Recruitment for the PAN is not over. If you have Lupus yourself, and are interested to take part and raise the voice of European people with Lupus in scientific projects, please let us know. A simple email to the secretariat ( will get the process in motion…

Torben Wiese to lead a workshop at LUPUS EUROPE Conference
Keynote speaker Torben Wiese is a dedicated speaker that makes everybody want to break their habits and “bend fish” (be present, think as leaders and use the present moment valuably) to reach higher goals. Torben has more than 30 years experience. Through workshops, education, and engaging talks, he has reached and motivated more than 300,000 people. He accepted our invitation to speak at our convention to help participants find new ways to bring their organisations further. Here are a few words from Torben on what you could expect in November:
Break your habits, bend the fish – and reach your goals!
“The only constant thing is change” said the Greek philosopher Heraklit more than 2500 years ago. This is more true than ever and everybody is told that the way to success is to be ready to change – at work, as a team or organisation. But this is not true anymore. Today we also have to create change. But in the face of all the changes, possibilities and threats are our habits which we couldn’t live without, but they might also slow us down and even make us lose or reach much less than we planned for. Be inspired how to deal with changes, how to break habits, how to be mentally present and succeed because of change more than in spite of change.

We welcome you to an inspirational, energetic, happy and thoughtful talk and workshop

Lupus Europe at the EPF Patient Advocate Summit

LUPUS EUROPE was represented by our PAN steering committee member, Laura Sinnett, at the  European Patients Forum EPF’s seminar in Brussels, October 20-21. The aim of the event ‘Be an EU health lobbyist for a day’ was to help the patient community become a key stakeholder in EU health policy debates. Laura, together with 29 other participants, was selected from more than 150 applicants from a wide variety of different patient organisations across Europe. Ahead of joining the seminar, all participants attended a Webinar ‘EU Affairs Fundamentals’ laying out the foundations and principals of lobbying in the EU.
 The seminar itself included the do’s and don’t’s of patient advocacy to support the creation of a variety of the team’s own strategy projects, briefing sessions, cracking the challenge and finally making a presentation to a Jury.
Here is What Laura said about her participation:
“Our team was assigned a fictitious EU Umbrella organisation working on cross cutting issues. The organisation was given a purported reputation, what its’ communications and press relations were, plus it’s financing position including a defined budget. Our toolkit primarily included a Proposal for an EU Directive on tackling discrimination at work on the grounds of health status. The process of making a presentation required us to tackle various investigatorial tools, making an ally power grid, identifying potential opponents to our advocacy campaign, potential allies’ risks versus the benefits exercise and take home wisdom pills for patient advocates. It was our decision on where to go with what was put in front of us and in what direction to focus on. The result was that the five teams came up with varying ways of addressing patient advocacy dependent on their means to lobby.”
Laura’s team named their organisation : ‘Invisible Getting Visible’, a European Patient Organisation Without Borders representing people affected by invisible diseases. In fact, of the billion people worldwide living with some kind of disability, 74% in one US survey don’t use a wheelchair or anything else that might visually signal their impairments. The team designed a Social Media campaign “‘EU, can you see me ?” to put forward questions on discrimination at work and whether one’s health condition in the workplace is revealed, (or not). the analysis of this data was to be used to influence the MEP’s identified who could amend the proposal of the EU Directive given the evidence provided.
Next to the obvious learning of the process and techniques, this was also a great way to build soft skills: “Time was of the essence. The challenge was not only the end result, but also how we got there dealing with 6 new people with their differing ideas and ways of working. We even had to use our breaks and meal times to network with the other fictitious organisations. We had to negotiate, depending on their specific resources, funding and assistance to augment our ultimate aim and align ourselves with them making useful and advantageous affiliations.”
Laura comes back from this training with new knowledge on EU lobbying, increased skills to work on them and an expanding network of friends among the participants to this great EPF event. The wonderful thing for LUPUS EUROPE is that Laura is an applicant for trustee position on our board next year 😊
For more information on this event, contact Laura.

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LUPUS EUROPE Uniting people with Lupus throughout Europe