International Lupus Congress Patients Programme Round Table Disseminating Key Results from recent Projects and Recommendations

Transcription

1 International Lupus Congress Patients Programme Round Table Disseminating Key Results from recent Projects and Recommendations Wednesday, September 2 nd Maria Theresien Apartment, Hofburg Congress Centre 12: Invitation only In brief: The recent achievements by international study groups and EULAR task forces have accomplished results that should be shared beyond the circles actively taking part. What are the key results and what messages should be made key for disseminating these to the greater audience: health care professionals and people living with lupus? Chairs: Kirsten Lerstrøm Francesca Marchiori Agenda 12:00 Welcome and introductions while having a bite to eat Why set targets for lupus treatment? what was the result of T2T and status on defining what is remission in lupus By Professor Marta Mosca MD PhD, Pisa University, Italy EULAR Recommendations for Women s Health in SLE/APS By Professor Angela Tincani, MD, Brescia General Hospital and University of Brescia Questions and discussion Channels of dissemination Presentation at meetings, social media, information kit for patient groups, e-learning and training By Nuria Zúñiga, LUPUS EUROPE co-opt Social Media and Lupus Madrid Setting up working groups and action plans Facilitated by Francesca Marchiori 14:25 Summation

2 Lupus World Engaged! Experience from involvement and news from research Friday, September 4 th Gartensaal, Hofburg Congress Centre 9:00 12:30 All patients and medical panel members are welcome, project leaders have priority access In brief: During the past two years, LUPUS EUROPE has represented people with lupus (untrained or as EULAR Patient Research Partners) in more than 20 task forces, projects and initiatives. The experience from this participation has proved to be a great learning experience for the individuals involved but has also boosted the level of engagement not just on a personal level but for the network as a whole. The voice of living with lupus has sounded! We have learned a lot and so have our partners in progress. This is the opportunity to share our experiences, developments and lessons learned, and discuss next steps. Chair: Anne Charlet Agenda 9:00 Welcome Involvement: Experience from EULAR Task Force on Recommendations By Francesca Marchiori, EULAR Patient Partner in Research Experience from International Study Group initiatives By Kirsten Lerstrøm, T2T and DORIS Experience from IMI Ethics Committee By Blanca Rubio, Reclassification of SLE Training - what is key to a PRP? By Francesca Marchiori Questions and discussion 11:00 From group to patient: Channels of information By Nuria Zúñiga, LUPUS EUROPE co-opt Social Media and Lupus Madrid Messages to share By Augusta Canzona, Lupus Italy From patients to group message from Patient Panel on Treatment By Alain Cornet, LUPUS EUROPE Secretariat Questions and discussion 12:25 Summation

3 Lupus Patient Leader Summit Meet the World of Lupus Saturday, September 5 th Gartensaal, Hofburg Congress Centre 9:00-16:45 Patients registered to attend have priority access. In brief: Lupus groups around the world all serve to assist the individual and provide information about lupus; driven by people with lupus to improve the situation for people living with the disease. The way each of us does this is different: from grass-roots set-ups around the kitchen table to highly professional organizations with political influence and great achievements for the good of the rest of the lupus groups. Good for the rest of the lupus groups if we were able to share these important achievements. World Lupus Day was inaugurated in 2004 and is now a key opportunity to create national awareness and campaigning for lupus on most continents. Together we face the same challenges: the current treatment for lupus now allows for a long life with a chronic disease. Treatment options, access to health care and compensation possibilities vary between regions, nations and continents. Lupus is still a complex and complicated disease where only one new compound in sixty years has been approved for use to manage the disease and this only under special circumstances Can we join forces and unite all patient groups into a federation of lupus on a global level? For the purpose of creating a stronger, unified voice and also creating a platform that can enrich groups with information, education and opportunities? While still preserving, enhancing and developing on the experience from living the disease? We have not yet had the chance to meet as lupus patient leaders to share, exchange views and discuss how to improve lupus groups. This is the chance, and the Saturday programme is devoted to exactly this agenda. Patient leaders from almost all continents have announced their attendance to the congress and to this Summit. The programme is divided into three sections: Meet the lupus world from kitchen table to Capitol Hill Join the conversation! Uniting the world lupus groups Inspirations and Aspirations cases from around the world We will join the Congress wrap-up and reception at the end of the afternoon. The World Lupus Dinner is at the Hotel Leonardo Vienna, with special guest appearance of Kim Spierenburg, violinist and other surprise presentations. We need to do better!

4 Lupus Patient Leader Summit Meet the World of Lupus Saturday, September 5 th Gartensaal, Hofburg Congress Centre 09:00 Welcome Aspirations and inspirations Chairs: Treasurer Kirsi Myllys, LUPUS EUROPE CEO Sandra Raymond, Lupus Foundation of America 09:10 Landscape of lupus groups Vice-Chair Blanca Rubio, LUPUS EUROPE 10:45-11:15 Coffee break Challenges, opportunities and diversity Chair Kirsten Lerstrøm, LUPUS EUROPE From grassroots to regional movement Secretary Dalilah Kalia, Lupus Alert Organizing local groups to federal political player Vice President, Network development Diana Gray, Lupus Foundation of America Questions and Discussion 11:15-12:45 Join the Conversation! Uniting the world lupus groups. Workshop Share your insights about how a new international federation might work who, what, why Hear about early discussions from a panel of organization representatives Contribute to next steps for a successful worldwide federation Facilitated Robyn Rickenbach, Springboard Intl, featuring organization volunteers Chairs: Trustee Katharine Wheeler, LUPUS EUROPE Comunication Director Duane Peters, LFA Lupus Advocacy South America By TBC 16: : Lupus in Canada Hosting Congress 2010 and beyond By Tanya Carlton, Vice president, Lupus Canada Lupus in Europe volunteers, projects, clinics, collaboration with rheumatologists, handling sponsors By Chair Augusta Canzona, Lupus Italy Lupus in Asia panel Indonesia & Philippines By Eko Pratomo, Ayo Bisono & Marilyn Robles Lupus Advocacy - in practice By Kim Schofield, Lupus Atlanta, Georgia, USA Lupus2017 Melbourne, Australia By TBC Coffee break Congress wrap-up and reception World Lupus Dinner Hotel Leonardo Vienna Matrosengasse 6-8, 1060 Vienna 14:15-15:15 Poster viewing and tours (with presenters)

5 LUPUS EUROPE Convention 2015 Council and workshops Sunday, September 6 th 2015 Hotel Leonardo Vienna, Matrosengasse 6-8, 1060 Vienna 9:00 16:00 LUPUS EUROPE members and special invites only Brief: The convention this year will be unusual with the Congress and Patient Leader Summit: intense and full days with lots of inspiration and new wisdom to bring home to the national groups. It will be a unique chance and opportunity for our members to get the medical updates and information by attending the congress and special meetings For the many members not able to spend a week in Vienna, the goal is for the weekend programme to provide just as much inspiration and information! We hope that this weekend, along with the Council meeting on Sunday and the special workshop on Treatment, will prove to be a special event with a high quality of education and information and a setting that will encourage new and old contacts to prosper. Member groups will receive further reading and a detailed agenda for the Council session: nominations for Trustee and more, 28 days before the event as required by our Constitution. During the week we will have our special debriefing sessions at Hotel Leonardo each day before dinner with the chance and opportunity to bring up important and relevant issues to be discussed when together. Agenda 9:00 Council opening and welcome Reports: Board of Trustees Secretariat Finance Elections Priorities 2016 Education and training by Chair Kirsten Lerstrøm, LUPUS EUROPE Youth by Jeanette Andersen, Co-opted Youth Sun Protection and new EUSCLE Recommendations on Management of Skin Lupus by Professor Annegret Kuhn, MD, MBA, Head, Interdisciplinary Center for Clinical Trials (IZKS), University Medical Center Mainz, Germany Any other business 12:30 Lunch 14:00 LUPUS EUROPE Workshop on Treatment Pills for life Chairs Davide Mazzoni, LUPUS EUROPE Co-opt for Patient Research Partners, Bologna University Alain Cornet, LUPUS EUROPE Secretariat Guests from UCB SA Announcement of Patient Panel II Treatment, call for delegates 15:45 Summation and closing comments with announcement of 2016 Convention in Würzburg, DE, Sep Oct.

6 International Congress for SLE 2015, September 2-6 Patients programme Organized by LUPUS EUROPE Practical information Registration for attending Congress: through the congress lupus2015.org Registration for Patient Summit: Venue, Wednesday, Friday and Saturday: HOFBURG Vienna Congress Center Heldenplatz, Vienna, Austria Venue Saturday evening and Sunday programme: Hotel Leonardo Vienna Matrosengasse 6-8 AT Vienna T: F: Further information