World Arthritis Day 2016

This year, we want World Arthritis Day (WAD) to be more powerful than ever! To do this we are asking people to share their stories about how they have taken action to live their life to the fullest with a rheumatic and musculoskeletal disease (RMD) in order to provide greater education to people both within the RMD community and the general public.

For more information and to access the toolkit. 

 

WAD_Thunderclap_image_600x280px_6-10-14_1

The LUPUS EUROPE Patient Panel is underway

It is starting!

After intense preparation, the second LUPUS EUROPE patient panel is now taking place in Brussels. From Friday to Sunday, nine patients from all over Europe will be discussing the theme of living with lupus, with a specific focus on treatment day after day.
Several focus groups and workshops have been scheduled, and we will once again benefit from new insights from UCB, this time on patient aspects and participation in Clinical trials, which we will be able to tie in to our reality.
Group discussions will be moderated by Bernadette (from Lupus Belgium) and Kirsi (from Lupus Finland)…. All participants are enthusiastic, and the sun is shining over Brussels!
More to come with some of the panel results!
Alain Cornet (Secretariat and Patient Panel facilitator)

Quality of healthcare?

What does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016.

The survey is aimed at patient representatives: primarily individual patients, their family members or informal carers, and patient organisation representatives across the EU.

You do not need in-depth knowledge or experience on quality of care to complete the survey! There are no right or wrong answers, as this survey is about your perceptions and opinions.

For more information.

Introduction from a new board member

In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE.

JeanetteAndersen04 head shot

“I was diagnosed with SLE in 2011, although I had had symptoms of the disease since the year 2000. I have a master´s degree in German and Philosophy from the University of Copenhagen and was a teacher in higher education until 2012.

Since I had to stop working in 2012, I have dedicated my time and energy to volunteer work for Lupus Denmark. In addition, I am a EULAR Young PARE working group member and now also on the LUPUS EUROPE board of trustees.

SLE has changed my life from a very active one, with a full-time job and a lot of fitness in my spare time to a condition, where I am immobilised in a wheelchair and can work only a few hours a week. Despite the disease casting a shadow over my life, my positive attitude and outlook has made me find a new purpose and meaning in life by helping other people with lupus all across Europe.

Unfortunately, I have been in the hospital a lot for my beginnings on the LUPUS EUROPE board, but hopefully things will change for the better and I will be able to be more active in the near future. For now, my two main focuses in LUPUS EUROPE are on the young lupus patients and communication to our members.”

 

The EUPATI toolkit has been launched

A Toolbox of presentations, videos, articles and other resources on patients’ involvement in development of new drugs for treatment was launched on January 27th. The EPF flagship project, EUPATI (the European Patient Academy on Therapeutic Innovation), has lanuched its Toolbox in 7 languages – read more on what fruits this will bring to patients and the research and regulatory community. Vimeo video on the toolbox.   EUPATI web site
Screen Shot 2016-03-08 at 19.54.58

EPF Regional Advocacy Seminar

 

logo_epf

Do you have members in Belgium, the Netherlands, Luxembourg or Germany? 

This year’s EPF Regional Advocacy Seminar is open to patient representatives from these countries. Make sure you share this opportunity with them!

This year’s Seminar is entitled “Getting the patients’ message across to the national and European level”. Participants will take part in a role play simulation game on EU decision-making!

When? 6-7 June 2016

Where? The Netherlands (venue to be confirmed)

For more information.