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Dear LUPUS EUROPE Members and Friends,
Time flies, and LUPUS EUROPE has been quite active since our last Newsflash. While we do our best to provide information through this newsflash, its very nature means that we can only select a few events, and group the news into regular short publications. But thanks to Katharine’s dedication, you can stay current with more developments by joining the LUPUS EUROPE Blog (http://lupus-europe-blog.org/). If you want to contribute to its content, don’t hesitate to get in touch with Katharine .
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3rd EUPATI TRAINING FOR PATIENT RESEARCH PARTNERS with interest in Medecine development
“European Patients’ Academy on Therapeutic Innovation” (EUPATI) offers a training opportunity for patient research partners with in interest in international medicine development.
Places are limited and we are not selecting the attendees. In total there are 50 places (to start in September 2017 and ending December 2018). In general the course is based on e-learning Face-to-Face meetings (4 days each) will take place in April 2018 and September 2018 (TBC).
Successful candidates are expected to commit to 150-175 hours for the e-learning and 8-10 days (including travel) for the face-to-face training sessions over a total period of 14 months for the complete training course.
Deadline for applications is on 31st March 2017. We will be delighted to support your applications. If you wish us to help, please make a first draft of the application form for us to discuss – download the form from the website (www.eupati.eu/third-cycle-apply-now/)
On the website you can also see the report from the great graduation ceremony that took place in December 2016 and see the list of graduates from Course II. We are very fortunate to have a graduate with lupus – Nuria Zúñiga, originally from Lupus Madrid and now settled in Dubai.
For more information , please contact Kirsten .
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LUPUS EUROPE WORKSHOPS ON RESEARCH
Over the past few years, one of LUPUS EUROPE’s strategic objectives has been that people with Lupus participate in and benefit from research. We strongly believe that research is key for people with Lupus. We need new treatments to improve long-term prognoses and the quality of life of people with lupus. We need a better understanding of the disease and its medical, but also social and psychological impact, so that effective plans can be put in place to provide the necessary support. We also strongly believe that such research can only take place with the active participation of people with lupus, and of patient organisations.
As part of our 2013-2017 Strategic plan, we have taken action to engage in this matter. We have appointed a trustee in charge of research, invested in training Patient Research Partners, participated in multiple research programs, conducted our own surveys and panels, actively engaged in the EULAR task force on SLE, … These actions have delivered results, but so much more is needed.
As we work on our 2018-2023 strategic plan focus areas, we want to ensure that we gather the best input from multiple stakeholders with experience of this topic. We want to understand how we can best (i) support clinical trials (so difficult in the area of lupus), medical research, sociological research and surveys that increase knowledge of living with lupus; (ii) bring the patients’ voice to Research and CT, and (iii) define paths to improved quality of life for our people.
To achieve these objectives, LUPUS EUROPE has initiated a number of Workshops with key people representing 3 different areas of expertise that can guide us in our thinking. On March 2nd, we held a Webinar with our Medical panel and other trusted academics. This was an intense 2 hours of discussions, hearing what people like Matthias Schneider, Ricard Cervera, or Ronald Van Vollenhoven (to name but a few) have to tell us on this topic. On March 17th, we will have the second workshop, a face-to-face meeting with several Pharmaceutical companies engaged in Clinical trials on lupus. On March 18th, we will continue, listening to partners, other patient organisations, to learn from their experience. During the convention, we had already collected feedback from our members on this important topic. We will further fine tune this through a survey in late March/Early April.
That complete input will then serve as a basis to prepare our Strategic plan, which will be discussed with our members at our next convention. For more information, contact secretariat@lupus-europe.org
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SAVE THE DATE: LUPUS EUROPE CONVENTION
LUPUS EUROPE’s next convention will take place in MILANO, Italy starting on the evening of Wednesday November 15th until the afternoon of Sunday November 19th.
The Convention’s theme will be “Pain, Fatigue and Stress: how to deal with it, how to measure it, how to communicate it with doctors”.
Augusta, Daniela and their team are already working on a great program mixing conferences, workshops, sharing sessions, exercise and social events to make this a memorable moment. More information will follow, but please already block the time in your calendars! If you have any input on what you would like to discuss, or for more information, please contact secretariat@lupus-europe.org
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LUPUS EUROPE will be heard at International Congress on Lupus (ICL 2017)
The 12th International Congress on SLE and Related Diseases will be held March 26th-29th in Melbourne Australia. This scientific meeting will be held jointly with the 7th Asian Congress on Autoimmunity. (www.lupus2017.org). Kirsten Lerstrom will represent LUPUS EUROPE at this event, and be one of the panelists on the Workshop for Lupus Group Leaders on Tuesday, March 28th, from 1:00 – 5:00 p.m, as well as one of the speakers in the plenary session 6: “Changing the script in lupus – an Academia- Industry-Patient roundtable discussion”.
As part of the Lupus 2017 scientific meetings, there will also be a one-day conference for patients and their families, covering what we have learned about the causes of lupus, the changing outlook for treatment of lupus, living and Coping with lupus , and the resources available for Patients with Lupus and their Families.
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Anne represents LUPUS EUROPE at OECD’s “Future of Health Forum” in Paris
 On Jan 20th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”. The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international policies. Generally, the OECD is associated with business, trade unions, developing economies, so it was a very pleasant surprise to see the huge commitment the OECD made to patients and world health with this Forum.
“Over 500 participants representing civil society, patients, providers, policy makers, academics and industry came together to discuss key issues including: Harnessing digital technology and data to create proactive, people-centred systems; Caring for people with complex needs; The importance of measuring what matters to people and to patients.”
The speakers were from all around the globe, including health ministers, economists, …, and a few patient representatives. It was a two-day meeting, with the first day open to patient representatives.
Thanks to an invitation issued during an EPF conference on Patient Safety, LUPUS EUROPE was able to attend, and was represented by myself. I went to listen and to learn, to meet and to tweet! It was a full day of very high quality presentations and relevant questions and answer sessions.
My first impression was one of surprise as I slowly realized that absolutely every single talk had a  patient-centric message: Ask the patient, involve the patient, get patient reported outcomes, “doctors have to get off their pedestals and patients off their knees”!
The presentation that impressed me most was by Michael Porter, an economist and professor at the Harvard Business School. He is not in favor of an incremental approach to developing and using patient reported indicators. “The only definition of a successful health system is one that produces value for patients. We must establish global standard sets of outcomes, condition by condition. There is no excuse for inaction,” he said.
His economist’s approach, quantifying something that we often view as only qualitative, was fascinating. He is a founder of the ICHOM project, which has as a goal to standardize outcome measures for key medical conditions, and thereby being able to truly show “success rates”. I learned at this forum that they are just starting work on their first auto-immune disorder: Rheumatoid Arthritis. For the moment, lupus is not in their plans, and as they are a non-profit organization and accept no funding from industry, they need to have a project funded first before they start work. Something for the future?
There were many more excellent presentations. The few patient representatives that were present seemed to be doing a lot of the tweeting, including myself: if you search on #Futureofhealth, you can read the tweets that went out over those days.
For any further information, contact Anne and to read a journalist’s account of the day, look at Tessa Richards: Power to the people—via Paris here.
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Sara represents Lupus Europe at EULAR PARE in Lisbon, Portugal (Feb 2017)
The 20th EULAR annual European Conference of PARE took place in Lisbon, Portugal at the end of February this year. Focusing on Rheumatic and musculoskeletal dis eases, topics covered included healthy workplaces, prevention of RMDs and access to work for people with RMDs as well as initiating the start of the 2017 campaign: “Don’t Delay, Connect Today!” .
This was Sara’s first conference as a Lupus Europe board member representing us and getting familiar with how the workshops and different meetings are held as well as networking with the kinds of people she will now increasingly be involved with as her role in LUPUS EUROPE’s research and Clinical trials area grows. Our Portuguese friends Rita and Inês were also there, reconnecting with Sara and Lupus Europe.
For more information, please contact Sara .
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Kirsten represents LUPUS EUROPE at ERN meeting in Vilnius
On March 9th EU President of the European Commission Jean-Claude Juncker opened the third meeting and Kick-off of European Reference Networks (ERNs) taking place in Vilnius, Lithuania.
Please see the short video presenting the concept of ERN here .
European reference networks (ERNs) help professionals and centres of e xpertise in different countries to share knowledge. ERNs should:
– apply EU criteria to tackle rare diseases requiring specialised care
– serve as research and knowledge centres treating patients from other EU countries
– ensure the availability of treatment facilities where necessary
24 ERNs have been established, with LUPUS EUROPE the patient representative in the ReCONNet on rare and complex rheumatic diseases, along with, among others, Scleroderma and EURORDIS’ EPAG. For more information , please contact Kirsten.
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