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Meet Marisa from Portugal!

Marisa Costa has lupus and is currently planning to run a marathon in Aarhus, Denmark August 6 this year! She needs all the help she can get and has created a crowdfunding page (see link beneath). Please help by sharing her story and showing her your full support ūüĎć

“I am Marisa Costa from Portugal. I intend to participate in the European Masters Athletics that will be held, this year, in Aarhus.

To get funding I have a crowdfunding page: https://ppl.com.pt/en/causas/campeonato-dinamarca

And I also have an athlete facebook page where I publish my accomplishments: https://www.facebook.com/MarisaCostaAtleta/

I hope I can count with your help to spread the word ūüôā

Having Lupus changed my life. I want to tell my story and I want to be an example to others.‚ÄĚ

 

NEW – LUPUS EUROPE “catch-up”

 

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At the beginning of this year, LUPUS EUROPE launched a new initiative, called ‚ÄúLUPUS EUROPE catch-up‚ÄĚ. The aim is to better keep in touch with our member groups throughout the year.

The first member group we spoke to was Norway. Katharine Wheeler spoke to Kari √ėdeg√•rd about the challenges and difficulties they face and about what they hope the future will bring.

Norway is a geographically difficult country, with lupus a small disease group. This makes it very difficult for members to stay in touch well and to meet up.

Some of the challenges they face include the lack of volunteers ‚Äď a theme common to most member groups ‚Äď and improving communication.

They are very enthusiastic about LUPUS EUROPE’s youth initiative and they hope that one day they can set up a youth group in Norway. They have also spread the word about the Kick Lupus campaign through instagram and are working on setting up a new, active Facebook page to better invigorate their group and its members.

You can get in touch with Kari at Lupus Norway with the following contact details:

Lupusgrupper i NRF

International contact :

Kari √ėdeg√•rd

+47 913 291 81

Association address:

Steinhagen 55A
4100 Jorpeland
Norway

Tel.: +47 233 490 81
Email: lupus@revmatiker.org

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Next,¬†it was Portugal’s turn¬†for a ‚ÄúLUPUS EUROPE catch-up‚ÄĚ. Katharine spoke to Rita ¬†Mendes and In√™s Ribeiro.

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This¬†week the Portuguese Lupus group will be attending EULAR PARE ‚Ästalong with¬†Sara Badreh from the board – so we chatted about what to expect and exchanged contact details for those attending.

Similar to the Norwegian group, the Portuguese group’s difficulties lie with funding and volunteers, especially volunteers with specific skills.

On the call Rita and Ines shared their hopes and thoughts, including some great ideas to move forwards together in the future. We will be looking into some of these in the very near future!

They are looking forward to being able to share their experiences and projects with other groups, both via the blog and the convention later in the year. We will be hearing more about one of those projects very soon ‚Äď watch this space!

They are also very excited to have their very own lupus athlete and runner, Marisa, who is hoping to go to the European Masters Athletics to be held in Aarhus, Denmark in July. We will be sharing more of her story later on.

You can get in touch with the Portugese lupus group with the following details:

Associação de Doentes com Lupus
Maria Altiva Paula

Tel.: +35 121 330 36 40
Email: altivap@gmail.com

An auto-immune perspective on EPF’s blog

In the context of EPF’s recent multi-stakeholder conference on Patient Safety, Katharine¬†was asked to tell her story as an example of patient safety in a chronic disease setting. You can read about it on EPF’s blog.

http://www.eu-patient.org/blog/?p=632#more-632

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Introducing Sara

Better late than never… it is time to introduce our newest board member, Sara Badreh. Sara was elected to the board at our convention in W√ľrzburg. We are delighted to have her on board and we’re sure that she will be a huge asset to our team. As you can see from her photo, Sara has a great sense of fun and is a lovely bubbly person to work with.

 

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“I am now 31 years old, meaning I have lived with SLE for half my life. I was diagnosed as a 16-year-old girl and from that moment on my life changed. I knew that one day, when I had this disease under control, I would dedicate my life to helping others in the same situation and contribute to how research, medical strategies, patient care and awareness of Lupus evolve in the future.

After a master’s degree in Molecular Life Sciences I am currently working at the Center for Molecular Medicine (CMM) at the Karolinska in Stockholm where I study the proteins involved in different singling mechanisms. I am also interested in starting and pursuing a PhD within the field of Rheumatology. Besides research I am also currently a board member of the Swedish Rheumatic Association at a district level, as well as at a regional level for Stockholm. What’s more, I am now a Lupus Europe Trustee and board member. 

Working with those organisations, as well as being involved at a research level, gives me the unusual opportunity of having one foot in both worlds. I can push research by having a voice in the field as well as I listening to the patients and catering to their needs.
I want to be as involved as much I possibly can, at every level. This is what I want to dedicate my life to. Making patients‚Äô lives better and inspiring others with Lupus, while showing that you can do and become anything you want.”

Kicking Lupus in 2017

Let’s Kick Lupus together in 2017

LUPUS EUROPE would like to extend warm wishes to all its members, partners and supporters. We hope that you all have a wonderful festive season and that the New Year is full of promise and fulfillment.

2016 has been a busy year for us, promising exciting times ahead. We are delighted to have had several abstracts presented at important Lupus events and to be involved in several new initiatives where the patient organisation takes on its role as a more equal partner in the healthcare field.

For 2017, our wish is that we all start to KICK LUPUS together! So much remains to be done towards our vision of a life without lupus… and yet there is so much we can do if each of us kicks lupus every day:

Kick Lupus is kicking yourself into shape by increasing your physical activity: it is proven to help reduce tiredness and pain over time and every little helps.

Kick Lupus is raising the patient voice and increasing our skills for better participation in research and inclusion of Patient Reported outcomes.

Kick Lupus is starting a better life by adhering to treatment, and working with the medical community for broader implementation of Standards of Care.

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Kick lupus is kicking ideas around: How can we better meet the needs of young people with lupus? How can we strengthen patient/doctor communication? How can we be active in the workplace?

Kick Lupus is raising awareness and support by volunteering in your local group, participating in events, or helping make a great World Lupus Day.

Kick Lupus is strengthening the links between LUPUS EUROPE, its members, and everyone living with lupus around Europe.

There are so many way we can all KICK LUPUS… Let’s get started! BEST WISHES FOR 2017 from all of us here on the LUPUS EUROPE board and secretariat.

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LUPUS EUROPE, convention 2016, in W√ľrzburg, Germany

December board meeting

The LUPUS EUROPE board met in Milan for a fruitful week-end of meetings from 9-11th of December.

Several topics were on the agenda, including the very first preparations for the 2017 convention and mapping out the very busy 2017 calendar of events and work sessions. As well as the board (minus the wonderful Anne who was unfortunately unable to attend), Augusta Canzona, Lucia Di Bernado and Daniela Rava from Lupus Italy were on hand to help out with convention details.

From left to right, Augusta Canzona, Kirsi Myllys, Kirsten Lerstrom, Alain Cornet, Katharine Wheeler, Lucia Di Bernardo, Sara Badreh and Jeanette Andersen (front).

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Swedish Lupus group 2016 convention report

The Swedish Lupus group have sent us their report of the LUPUS EUROPE convention in W√ľrzburg. It’s in Swedish – of course – but we thought it would be nice to share with you!

Have you made a convention report for your group’s newsletter or magazine? If so we’d love to share it here too ūüôā

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For a PDF version of the report swedish-convention-report

European Parliament Interest group…

Today, Tuesday, December 6th¬†Chair Kirsten Lerstr√łm, 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 ‚Äď 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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