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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21 hours ago

🌟This December, we're embarking on a mission that holds the key to effective #lupus management.

🤔 Can you crack the code and guess the theme that ties us together this month?

Stay tuned as we unveil the secret to a healthier, empowered lupus journey.

🚀 Let the guessing game begin!

#kicklupus
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🌟This December, were embarking on a mission that holds the key to effective #lupus management.

🤔 Can you crack the code and guess the theme that ties us together this month?

Stay tuned as we unveil the secret to a healthier, empowered lupus journey.

🚀 Let the guessing game begin!

#KickLupus

1 CommentComment on Facebook

How to try "tame the Wolf" or at least not let "Wolfie" run amock perhaps?

2 days ago

🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
... See MoreSee Less

🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilitiesImage attachmentImage attachment
2 weeks ago

🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.

⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?

🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.

💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.

#kicklupus by talking to your physician about vaccination and other prevention measures!
... See MoreSee Less

🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.

⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?

🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.

💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.

#KickLupus by talking to your physician about vaccination and other prevention measures!Image attachment
2 weeks ago

🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 buff.ly/3rUWfTt

🙌 This month, we talk about prevention to #KickLupus
... See MoreSee Less

🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 https://buff.ly/3rUWfTt

🙌  This month, we talk about prevention to #KickLupus
LUPUS EUROPE Uniting people with Lupus throughout Europe
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