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 Würzburg. 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’ 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 Würzburg, Germany