The blog has been quiet since our great convention in Vienna and over the holiday period but that doesn’t mean we have been inactive. Here’s a glimpse of some of the past and upcoming activities that LUPUS EUROPE is part of. In addition to those listed there have also been other meetings with sponsors, the new World Lupus Federation and so on.

Past events

30th September – the third in a series of workgroup meetings at EPF on Access to Healthcare. Secretary, Katharine Wheeler, attended.

13th October – EULAR WAD Conference Brussels, Towards more integrated health care in Europe: Strengthening patients’ access to cross-border care and enhancing health professionals’ mobility – Experiences, challenges and policy developments in the rheumatic and musculoskeletal disease field. Chair Kirsten Lerstrøm represented LUPUS EUROPE.

28-29 October – EFPIA Health Collaboration Summit, Brussels. Attending on behalf of LUPUS EUROPE was former Co-opt Bernadette van Leeuw and Secretariat Manager Alain Cornet.

23 Nov – PaSQ (Patient Safety and Quality of care) information and discussion meeting, Madrid, Spain. Further information on PaSQ here.

24-25th November – Regional Advocacy Seminar, Lund, Sweden. Strengthening the patient’s perspective in EU policy-making and research. Representatives from Nordic countries have been invited to attend the seminar.
Kirsten Lerstrøm has been selected by EPF to represent LUPUS EUROPE and present on advocating patient driven research policies.

25th-26th November – European Medicines Agency Human Scientific Committees’ Working Party with Patients’ and Consumers’ Organisations (PCWP) meeting, London.  Judith King represented LUPUS EUROPE.

8-10th January – Board of Trustees meeting – Convention planning and other matters.

IMG_4456
The 2015-2016 Board of Trustees and Secretariat – front row – Anne Charlet (Vice Chair), Jeannette Andersen (Youth), Kirsten Lerstrøm (Chair) – back row – Kirsi Myllys (Treasurer), Katharine Wheeler (Secretary), Alain Cornet (Secretariat), Blanca Rubio (Vice Chair).

Upcoming events

4-5th February – PaSQ meeting, Barcelona, Spain.

10-11th March – Preciseads III European Conference, Granada Spain. LUPUS EUROPE Vice-Chair Blanca Rubio is member of the Ethics Committee.

22-23 March – European Patients Forum AGM, Brussels. Previous annual reports can be found here. The 2013 report is of particular interest for an introduction to the key patient issues in Brussels since the beginning of the Millenium. The theme this year is Patient Empowerment, Mental health and Partnerships. LUPUS EUROPE Secretary Katharine Wheeler and Claudine Goyers (PRP) will attend.

6-10th April – Autoimmunity Congress, Leipzig, Germany. LUPUS EUROPE Vice-Chair Blanca Rubio is a patient contact for this congress.

9-11th April – IAPO (International Association of Patients’ Organizations) Global Patients’ Congress, London, UK. The theme this year is “Innovation improving sustainable access: how to boost your reach and impact”. LUPUS EUROPE Vice-Chair Anne Charlet will attend and present on “Patient mobilisation, empowerment and patient advocacy”.

15-17th April PARE Eular Conference, Sofia, Bulgaria. The theme this year, as last year, is “Patient Centered Care – Taking Control”. Attending for LUPUS EUROPE will be Vice-Chair Blanca Rubio and Amaia Dominquez.

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2 days ago

👨‍⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
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👨‍⚕️ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment
3 days ago

😨 Did you miss our #eular2024 debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters and some of our PAN members!

EULAR Congress 2024 Debrief Webinar
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😨 Did you miss our #EULAR2024 debrief webinar?

😮‍💨 Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters and some of our PAN members!

https://www.facebook.com/LupusEurope/videos/815970850254193
1 week ago

🌟 Thank you to all who attended our #eular2024 debrief webinar!

🙌 Especially to our presenters and PAN members who shared their invaluable insights and experiences.

Stay tuned for more news and updates and don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
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1 CommentComment on Facebook

Svær sygdom ♥️👊

1 week ago

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4 CommentsComment on Facebook

To try out LupusGPT, just go to: lupusgpt.org/ This is a multi-lingual tool, so do try it in your language and let us know what you think!

This is the webinar Jeanette Andersen, Lupus Europe Chair, mentioned in her feedback on "CAR T Cell Therapy in Lupus: Promises and Challenges Explored": www.youtube.com/watch?v=JMifTgQgvVs&t=3s

Thank you

LUPUS EUROPE Uniting people with Lupus throughout Europe
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