European Parliament Interest group…

Today, Tuesday, December 6th Chair Kirsten Lerstrøm, LUPUS EUROPE, was invited to address the European Parliament Interest Group on Rheumatic and Muscoskeletal Diseases (RMDs) on Patients’ Perspectives on Improving Access to Care and Therapies for People with Rare RMDs at the meeting of “Policy Issues and Challenges in the Treatment and Care of Rare Diseases”.

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Patient Solidarity Day – IAPO

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The 3rd of December is Patient Solidarity Day.

Support IAPO’s (International Alliance of Patient Organisations) Thunderclap through your social media accounts by clicking here: http://thndr.me/7mJakT

For more information on what a Thunderclap is and how to use it, click here.

The aim is to reach at least 100 supporters on Thunderclap, otherwise the message won’t be shared on 3 December. Please share this link as widely as possible through your networks so we can achieve the goal.

There are plenty of other things you can do to spread awareness of Patient Solidarity Day. Please visit IAPO’s  website for other ideas and resources (in both English and Spanish) to help you plan your activities for, and in the run-up to, 3 December. Please do take part in any way you can – it will make a big difference having your involvement.

Questionnaire on pregnancy in Lupus & other rheumatic diseases: prolongation

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Before the end of the year, we are sending our last reminder! We would like to thank you for your participation and kindly ask, for one last time, to inform your members of our questionnaire.
The study is going very well so far, we have had almost 400 responses from 26 different countries. The greater the participation, the more information we will have that could possibly be representative of each country; thus, we would like to extend our study until December 15th. Our aim is to investigate the pregnancy experience that women with rheumatic diseases go through, in order to voice their concerns, reveal problems they’ve faced and identify areas of improvement of the health system, and we are close to finalising our efforts. Please share our questionnaire through email, Facebook, website-link or other way of your preference.
Attached please find the links to our questionnaires:
We deeply appreciate your support!
Kind regards,
Ilianna Armata 3rd yr medical student
J. Joseph Associate Professor
St George’s University of London programme at the University of Nicosia Medical School, Cyprus.

Sunscreens survey deadline extended

The deadline for the European survey on sunscreen application in patients with lupus erythematosus (SmiLE-Survey) has been extended until November 15, 2016.
You can reach the survey at the following link http://www.euscle.org/survey. Please feel free to share in your own networks.

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New York Marathon – Andreas

We are nearly there, Andreas Panteli will be running for LUPUS EUROPE in the New York Marathon on 6th November.

Experience the World’s Biggest Marathon

You can catch the excitement of the TCS New York City Marathon from anywhere on the planet. In the New York tri-state area, the race broadcasts live on WABC-TV, Channel 7, from 9:00 a.m. to 2:00 p.m. ET. Pre-race coverage starts at 7:00 a.m. The race will also be live on abc7ny.com and via the ABC app. Outside of the tri-state area, live coverage runs from 9:00 a.m. to 12:30 p.m. ET on ESPN2 and via WatchESPN. Additionally, the race will be available in Spanish via ESPN Deportes+. Find out more ways to watch. Download the TCS New York City Marathon Mobile App Powered by Tata Consultancy Services to live-track up to 20 runners, check out the course map, and see the full schedule of race-week events.

For a pre-taster, here are some photos from the Pavillion.

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LUPUS EUROPE convention report

For those of you who may have missed it or who are not signed up on our mailing list, here is the link to the convention report for LUPUS EUROPE’s annual convention which was held this year from 28th September – 2nd October 2016.

If you don’t currently receive our newsletters and emails and would like to, please get in touch with the secretariat at secretariat@lupus-europe.org

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Nearly there – Andreas running for lupus

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2 weeks to go, Running for Lupus

Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo

Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will see the real thing in the next post. I also received a new US visa to be allowed to enter the country  – remember my previous Visa was in the passport that got stolen last month. Additionally, I managed to apply for a replacement South Africa Permit – you see, that was also on the stolen passport! Without that I might not have been allowed to travel outside the country. The most important thing is that I did everything necessary to be able to attend and run in the New York Marathon for Lupus. And here I am, 2 weeks before the race, blogging.  My only concern now is my knee injury that doesn’t seem to let go. But I will fight that as well. Also, stay tuned for the next post where I will share how to follow me during the race using a mobile app.

Another interesting update I was told last week is that I was selected to be a flag bearer (for my country – Cyprus) during the New York Marathon opening ceremony on the 4th of November, 2 days before the race. Because of that, Lupus Cyprus has decided to dedicate the Lupus month of October to myself and the effort to raise Lupus awareness. I feel honored to represent my country and show that being a Lupus Warrior doesn’t mean your life goals are put aside.

On different note, the European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. Lupus Europe has been closely involved in this important project. The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. Find more information here, and participate in the survey here.

Last, check out Lupus Europe’s Goodbye post to Würzburg – 2016 Lupus Europe convention here.

Below is my training for the previous 2 weeks and this coming week

Monday 10th:        5km run
Tuesday 11th:        rest
Wednesday 12th:    5km run
Thursday 13th:    1km swim
Friday 14th:        20km cycle
Saturday 15th:        5km run
Sunday 16th:        15km run
Monday 17th:        rest
Tuesday 18th:        30km cycle
Wednesday 19th:    1km swim
Thursday 20th:    rest
Friday 21st:        5km run
Saturday 22nd:    5km run
Sunday 23rd:        10km run, 30km cycle
Monday 24th:        1km swim
Tuesday 25th:        5km run
Wednesday 26th:    10km run
Thursday 27th:    30km cycle
Friday 28th:        rest
Saturday 29th:        5km run
Sunday 30th:        rest

For Andreas’ full marathon story https://lupus-europe-blog.org/run-with-andreas/

 

Sunscreens survey update

There has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016.

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The European Society of Cutaneous Lupus Erythematosus e.V. (EUSCLE e.V.) has set up a European survey on sunscreen application in patients with lupus erythematosus. LUPUS EUROPE has been closely involved in this important project.

The aim of the observational study “Sunscreens in Patients with Lupus Erythematosus (SmiLE)” is to investigate the type of sunscreen applied by patients with lupus erythematosus and efficacy in daily life. This project was winner in the category “Leadership Community” of the Galderma SKIN PACT Award 2015. Detailed information on the study, its purpose and background are provided here: http://www.galdermaskinpact.org/winners/sunscreen/.

An online questionnaire for patients has been translated into 20 European languages. Patients with any type of systemic lupus can fill out the survey. You can go to the survey at this link and participate in this important project:

http://www.euscle.org/survey.

 

World Arthritis Day – EULAR conference on reducing the burden of chronic diseases in the workplace

Today is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards.

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The conference was opened by EULAR president Prof. Gerd R. Burmester, who addressed the issue of people with chronic conditions being a burden on society. The question to ask is “Do we need new policies for better working conditions and the retention of ill people at work?” In order to answer the question, we first have to ask an additional question: “How well is Europe doing in preventing musculoskeletal diseases in the workplace and facilitating people with RMDs staying in work? What else needs to be done?”

After the opening session Laurène Souchet, policy Officer at EPF, talked about the main challenges in health and safety at work for people with chronic conditions. Dr. Rikke Helene Moe, a physical Therapist and researcher at National Advisory Unit on Rehabilitation in Rheumatology in Norway told us, that “Work is good”! She pointed out, that studies have shown how preventive strategies, such a healthy lifestyle and maintaining a job, can help improve the clinical impact of RMDs.

Antonio Cammarota, Head of the OSH Committees and International Relations Team, DG Employment and Social Affairs, European Commission spoke on how the EU intends to reduce the burden of RMDs and other chronic diseases in the workplace through legislation and policy initiative developments.

Lastly before participants broke off into workshops, Marious Coloumas, EULAR Vice-President representing People with Arthritis/Rheumatism in Europe (PARE) gave the patients´ point of view, when it comes to preventing RMDs and including people with RMDs in the workplace.

Participants were then divided into the three different workshops:

  1.  Primary, secondary and tertiary prevention of RMDs in the workplace: What legislation and policy initiatives do we need?
  1. Dealing with RMDs in the workplace: How to improve access to occupational health professionals and therapists?
  1. How to facilitate the retention of people with RMDs in the workplace as well as the return to work after sick leave?

Possible answers to these questions were then presented on slides.

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Before closing today’s conference, a panel debate was held on the subject: Do we need better EU legislation to reduce the burden of RMDs in the work place?

On the panel were:

Biljana Borzan (Member of the European Parliament) | Antonio Cammarota (Advisory Committee on Safety and Health at workplace, DG Employment and Social Affairs, European Commission) | William Cockburn (Head of the Prevention and Research Unit, European Agency for Safety and Health at Work) | Marina Monaco (Advisor, European Trade Union Confederation) | Patrick Gibbels (European Small Business Alliance), tbc | Prof. Anthony Woolf (Universities of Exeter and Plymouth & EULAR) and as a moderator: Cathy Smith (Journalist).

The main outcome of the debate was that new policies/laws in the workplace may not actually be needed. Perhaps it is enough to make sure, that existing laws are implemented more rigorously by each EU member state.

All of today’s results will be communicated directly to EU policy makers to improve conditions at the European level.

Jeanette Andersen

EPF guide for Patient Organisations on new Data Protection Regulation

EPF publishes a guide for patient organisations on the new Data Protection Regulation

The new Regulation on personal data protection (EU/2016/679) was published in May 2016 and will apply from May 2018. It provides more rights to citizens to be better informed about the use made of their personal data, and gives clearer responsibilities to people and entities using personal data… to read more.

Goodbye to Würzburg – LUPUS EUROPE convention

The LUPUS EUROPE convention has come to a close. Four intensive days of work, sharing, inspiration, education and exchange! We have all learned a lot from each other and from the wonderful speakers who shared their knowledge with us.

A huge thank you goes out to our members who made this convention a great success with their enthusiasm and participation. Everyone is now exhausted but happy and inspired. See you all next year!

European Lupus Meeting – Venice October 5th-8th

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The European Lupus Meeting is a scientific congress focusing on clinical practice and lupus research in Europe, that takes place every other year. This year it will take place in Venice from October 5th – 8th. Between 500-700 people, with the majority being doctors from the rheumatology or immunology fields, but also various other specialties, will attend to get updated on what is happening in lupus.  Some people from industry and a few patients, among others, will also participate.
Earlier this year LUPUS EUROPE called all members and our online community to encourage the submission of abstracts with a patient perspective for the scientific review at the European Lupus Meeting 2016.
We received 6 eligible abstracts – and all 6 were accepted! Two for oral presentation in the programme and four for poster viewing during different sessions. This is a fantastic success rate and we congratulate everyone for their hard work:
Marina Falanga will present on THE ITALIAN SLE SURVEY BY WEB: INVESTIGATING PATIENTS’ UNMET NEEDS AND IMPROVING CARE SYSTEM THROUGH VIABLE ONLINE SURVEY TOOLS October 7th, Perla Room, at 12.10-12.20.
Davide Mazzoni will be giving his oral presentation of SOCIAL SUPPORT AND QUALITY OF LIFE IN SLE on October 8th, Casino Room 12.10-12.20.
Elena Forgione will present her poster Sociocultural context; Mind-Body; Doctor-patient relationship on the 7th, during the morning poster viewing session.
Amaia Dominquez will present her poster SYSTEMIC LUPUS ERYTHEMATOSUS; HEALTH-RELATED QUALITY OF LIFE (HRQOL); PAIN, also on October 7th, in the afternoon poster viewing session.
On behalf of Blanca Rubio, Kirsten Lerstrøm will present Capabilities of European lupus groups; Members of LUPUS EUROPE, also during the October 7th afternoon poster viewing session.
Patients are admitted without a registration fee which is a fantastic acknowledgement of the situation of the patients themselves as well as the groups they could represent. None have any funds to pay the rather substantial admission fee, when on sick leave or working on a voluntary basis. This year a small group of patient representatives has registered and, further to the above mentioned, a good group from Italy will be there, together with a couple from the UK, Denmark, Lithuania and France.
We are really looking forward to the four days of the European Lupus Meeting 2016!