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Dear LUPUS EUROPE member, and PAN or Comm Member,
Lupus Europe is proud to announce that the 30th Annual Lupus Europe Convention 2019 will be held in Liverpool, England. The convention will start on Friday evening 22nd November, finishing Monday 25th November. Members past & present should be super-proud of this achievement and their part in the 30 years of Lupus Europe history. This occasion, combined with a city full of atmosphere and tradition, will be another fantastic convention. Building on the great work of Leuven, Belgium 2018, we will bring our members an exciting programme. This year’s theme will be ‘Education to Empower’. Knowledge is crucial in managing lupus so the convention is an ideal opportunity to share ideas and collaborate on various aspects of improving knowledge for ourselves and our members. But Education and Empowerment go well beyond the mere sharing of information. How can we use knowledge to help our members grow and be more empowered to positively take actions in their lives to kick lupus further away?
Please carefully read the information below as there are several important changes that require your attention now. Waiting to the last minute to take action would be costly and might result in missing registration discounts.
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LUPUS EUROPE’s convention will start in the afternoon of FRIDAY November 22nd and finish on MONDAY November 25 after lunch.
- On Friday, we will open registrations from 16:00 in the Radisson Blu, Liverpool (more access and location details below), where we will hold our traditional Welcome Dinner to exchange the latest news, greet familiar faces and welcome new delegates! Please read the important information below in the section “Pre-convention activities” about possible anticipated start.
- Saturday’s highlights include Professor Graham Hughes who will share his perspective on 30 years of patient education and empowerment in lupus. On the same day, we will also enjoy workshops on topics related to education and empowerment, a presentation on best practices related to education in lupus and posters presented by the board and PAN members on activities in the research area. We will close the day with an open Q&A with a leading lupus specialist (we are awaiting final confirmation of availability of this world-renowned star). Please note, this Saturday will be open to external participants, including our industry sponsors.
- Sunday will start with our council session. To lighten this session, we will split the review of our achievements and plans in smaller blocks, throughout the convention, so that the council session can be reduced and focuses on the council matters: accepting new members, reviewing financials, electing trustees, and aligning plans for the year ahead.
- As every year, we seek to renew part of our Board and look for candidates to join as trustees. This is critical for our sustainability, so please consider seriously whether you or anyone else in your organisation would be interested in joining the LUPUS EUROPE Board!
- This year, in addition to trustee elections, we will also seek co-opt positions; members who would like to “test” over 1 year what it feels like to be a LUPUS EUROPE trustee. They will participate to LUPUS EUROPE’s operations in a same way as trustees, without voting rights in decisions, and at the end of the year, can decide to apply for a Trustee position or not. See more on the trustee & co-opt application form.
- Also, on Sunday, you will have the opportunity to present your best practices on patient education, with a poster session. Taking part will earn you a 50€ discount (see below), and you might win the “best poster award”. In the afternoon, we will enjoy a presentation from Professor Ian Bruce, leader of the Masterplans initiative, and of Simon Stones (ENCA) addressing “how to make a good poster”. The day will close with a group dinner at the “30 James Street” restaurant.
- Our Monday program will start with a review of our strategy to ´be heard and acting´. We have recently launched a “communications work group”, to improve and manage our activities in this field. We will then hear about “how to address lupus with teenagers”, taking the opportunity of the closeness of Alder Hey Hospital, Centre of Excellence for lupus youth. Finally, there will be parallel workshops. We will close the convention with lunch.
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We have found a brilliant hotel overlooking the River Mersey with great accommodation, facilities and staff who are excited to be working with us. Radisson Blu, Liverpool (107 Old Hall Street, Liverpool), in the Business Quarter which is close to the Liver Building and the Cruise Liner terminal. Facing west, the hotel allows you to catch the sun setting over the mountains of Wales. You can find more information about the hotel at this link https://www.radissonblu.com/en/hotel-liverpool. We will ensure accommodation from Friday evening until Monday morning as part of the convention registration. If you wish to extend your stay, you can make your own additional reservations directly with the hotel by internet or by calling +44 151 966 1500. Please mention that you will be part of the LUPUS EUROPE convention and wish to extend your stay so that they can ensure that you stay in the same room.
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To reach Liverpool, depending on your airport of origin, there are two main options:
- either flying to Liverpool airport (airport code LPL), or flying to Manchester (MAN) and taking bus or train from Manchester airport. Liverpool is reached in 50 min. For the return at end of the convention, we will arrange group taxis.
- Liverpool is also well connected by intercity train services, local public transport and road networks. London is 2 hrs 8 mins away by train.
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PRE-CONVENTION ACTIVITIES
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Based on last year’s success, we will organise special events on the Friday before the convention:
Patient Advisory Network Face to face meetings (PAN members only) will start on Friday 22 at 09:00. Detailed agenda will follow. Eligible participants will benefit from full travel support and either free attendance to the convention till Saturday afternoon, or a discounted price of 100 euros if they decide to attend the full convention. From this, a reduction of 50€ can be obtained if they present a poster as well (see below).
Communication Working Group Face to face meetings (Comm members only) will start on Friday 22 at 14:00. Detailed agenda will follow. Eligible participants will benefit from full travel support and free attendance for the convention which they will cover extensively “live” and through web/other media.
Industry Focus group (open to up to 10 participants): On Friday afternoon, starting at 14:30, we will conduct a 3-hour focus group with one of our industry partners. We have 10 slots available for participants. Attendance to this event will earn a 100€ discount for those participating. To be able to join, your flight should be scheduled to arrive no later than 12:00 in Manchester or 13:00 in Liverpool on Friday. We are working on the opportunity to offer more slots to such session.
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Instead of oral presentations for country sharing, we have reserved a full hour for poster session this year. All participants are invited to make a poster on something they do in their national group that helps “Educate to empower”, or alternatively on an initiative that they have run over the past year and would like to share with the other participants. Participation to the poster tour will earn a 50€ discount on the convention fee of the presenter. Final posters should be sent to secretariat@lupus-europe.org no later than November 10, and should be in the A1 format. Posters will be printed by Lupus Europe so that you do not need to carry them with you when you travel.
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We will continue with the price structure agreed in Milan’s council session, with pricing conditions favouring those members that actively engage with LUPUS EUROPE during the year.
The base convention fee targets recovery of the full cost of participants, i.e. 525 € per person.
Discounts apply to full members in order of membership fee:
- An early bird discount of 125 € applies for REGISTRATION no later than September 1 and PAYMENT no later than September 15th. (This allows us to avoid penalties for room cancellation)
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For each of the proposed “discount earning activities” offered during the year, participants can earn a 50 € discount. The maximum discount per person is 200€. The activities deserving discount are:
- Relaying the campaign “Volunteer for lupus Europe” sent March 5, 2019 to benefit from the discount, we must have received at least one application from/through your country.
- Relaying the Survey “ESLP 2019” of June 2019 (a bonus of an extra 50€ is offered to the 3 members with highest reach per capita)
- Presenting a poster at convention. To be eligible, an abstract or PDF copy of the poster should be sent to secretariat together with the registration.
- Relaying the Kick Lupus 2019 campaign (details sent by separate mail end June). To earn the discount, you must have relayed the initiative to your members and we must have at least one participant from your country.
- If you participate to the Pre-convention industry panel discussion, you will obtain an extra discount of 100€, which can come on top of the above.
- If you agree to share a room, we will pass on the savings of an extra 50 € per person. Please mention clearly if you wish 1 double bed, or a room with 2 beds, and with which participant you will share. Companions or helpers sharing are considered as participants, with the related fee applicable, as the fee only covers our actual costs. If you are joined by a companion who is NOT participating in the lunches and dinners, please consult secretariat.
So, whether you want to pay 525€ or only 50€ is all up to you! But if you want to earn the discounts, some action might be required now…
Please note that, as the discounts are only available for up to 2 participants per member group, it is up to the Member association to decide on which of their participants will benefit from those discounts.
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Minimum deposit:
While the convention fee could be as low as 50€ per person, we will ask you to make a deposit of either the calculated convention fee amount or 200€, whichever is highest, upon registration or prior to September 15th in case of early registration. In case the amount paid exceeds the calculated price based on actually meeting discount conditions, the excess amount will be applied to membership fee of the next year or refunded. The deposit will be retained in case of a “No show”, late (partial or full) cancellation, or missing the council session due to early departure/late arrival.
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Travel Grants
For those of you that have limited financial resources which would prevent them from attending this critical event, there will be a possibility to apply for a travel grant of up to 200€ per person. A limited number of maximum 10 travel grants will be available. To benefit from the grants, you must meet the following conditions: (a) your member organisation must be up to date with membership fees through 2018 (membership fee note will soon be out), (b) you must commit to actively participating in the entire convention, from dinner on Friday evening until the end of the convention Monday at 14:00, (c) you must have performed at least 3 of the 4 discount earning activities and (d) you must apply for the grant(s), with your registration form, no later than September 15th, 2019. We will inform you about the acceptance of your grant by end September.
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Liverpool is a city in North West England, with an estimated population of 600,000. The city celebrated its 800th anniversary in 2007. Several areas of the city centre have World Heritage Site status by UNESCO. The Liverpool Maritime Mercantile City includes the Pier Head, Albert Dock, and William Brown Street. Liverpool’s status as a port city has attracted a diverse population, which, historically, was drawn from a wide range of peoples, cultures, and religions.
Known locally as ‘Town’, Liverpool is quite a small city and may be familiar to some of you. If you’ve not visited before, you most certainly have heard of a few famous connections such as four boys called The Beatles, the Ferry across the Mersey, the Liverpool football team, Tate gallery, the Philharmonic, not one but two incredible cathedrals, arts, … however, there is so much more that makes this town’s heart beat. Liverpool can’t promise you warm weather for this year’s event, but a warm welcome will certainly be waiting. Here is a link to a Liverpool Visitor site https://www.visitliverpool.com.
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 We are so excited about this year´s convention and look forward to seeing you there!
Any questions? Don’t hesitate, simply send a message to secretariat@lupus-europe.org. We will be delighted to help.
Register Now! Why wait to benefit from collaboration with your peers on best practices for patient leaders and organisations? Prompt registration will help us get organized efficiently.
All the documents are here: Registration form, Trustee/Co-opt application form, Convention program, and convention invite in PDF format.
On behalf of the board, we look forward to seeing you there!
Yours,
Alain Cornet Helga Ovens
General Secretary Trustee – Convention lead
LUPUS EUROPE LUPUS EUROPE
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