Do you have experience of Cross Border Healthcare?

A call from the European Patients’ Forum:

In order to gain some more insight on “direct” experiences of patients, EPF would like to get in touch with patients who have accessed treatment across borders (whether under the regulation or the directive), who have tried to access cross-border healthcare, who have tried to find out information about cross-border healthcare, whether they were successful or not.

Know someone in that position? Please share our call!

Deadline 15th March. For more information.


Present the patients’ perspective – European Lupus Meeting


The European Lupus Meeting is taking place in Venice, Italy from 5th-9th October 2016.

This year will be a great opportunity to share the research work done by patient organisations and/or single or groups of patients. This is a unique opportunity to present our work in the same sessions as the doctors.

LUPUS EUROPE invites all patients and patient representatives to submit an abstract as described on the LUPUS EUROPE website.

To submit an abstract please fill in the form (link below) and send it with the abstract to Kirsten Lerstrøm, LUPUS EUROPE, Chair (, Francesca Marchiori, LUPUS EUROPE Co-Opted Patient Partner in Research (  and LUPUS EUROPE Secretariat (

Please contact any of the above for further information. Link to LUPUS EUROPE website and the abstract submission form (attached document), please click here.  The deadline for submission is 29th February. 

If you have any further questions please don’t hestitate to get in touch with Kirsten Lerstrøm, LUPUS EUROPE, Chair, Francesca Marchiori, LUPUS EUROPE Co-Opted Patient Partner in Research or LUPUS EUROPE Secretariat.


Past and upcoming events

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.


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.