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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3 days ago

🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a person's wider context, including these non-clinical factors.

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

www.youtube.com/watch?v=RT2Qtllx2-s
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🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a persons wider context, including these non-clinical factors. 

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

https://www.youtube.com/watch?v=RT2Qtllx2-s

13 CommentsComment on Facebook

Daniel Guimarães de Oliveira - Imunologia Clínica

That's true! Many people with problems are compelled to stop their cures because they do not have the money

I was never a person who believe in herbs as a means of treatment, now I know better, herbs has more efficiency than any pharmaceutical medicine. I suffered from FND with no results from pharmaceutical medicines, but after using herbal medicine from Dr Ehota I got cured of my ailments. I will advice you to try herbal medicine as well Contact Dr Ehota Dr Ehota

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4 days ago

‼️Today is #worldsjogrensday, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.
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‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögrens is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.

5 CommentsComment on Facebook

I know

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1 week ago

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches.

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik
... See MoreSee Less

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches. 

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

https://youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik

4 CommentsComment on Facebook

Wow, it would certainly make an enormous difference in our lives!!! Iron deficiency can be difficult to overcome because of stomach problems but it would certainly be worth trying to get rid of this perennial fatigue.

Natural🌿remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from a deadly disease and neuropathy by Herbalist His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 Dr Osabor herbal home

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2 weeks 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
... See MoreSee Less

👨‍⚕️ 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
LUPUS EUROPE Uniting people with Lupus throughout Europe
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