About being a trustee – Katharine’s story

Here is our second ‘Trustee story’, this time from Katharine. 


When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations.

I haven’t been able to work for a few years due to different auto-immune diagnoses, one of which is lupus, but, now that I am being better followed up and have a better medication regime, I realise I can do a little to help out.

When I learned that LUPUS EUROPE were looking for nominations to be a trustee, I was interested but absolutely terrified of not being able to do the job. Unlike some people within LUPUS EUROPE, I don’t have experience of running a national patient association and I also hadn’t used my work skills for a few years so felt rusty and lacking in confidence.

In the years prior to applying to becoming a trustee, I had been helping out by attending certain important events, representing LUPUS EUROPE at EPF & IAPO. I realised when attending these events that I would do a far better job if I were more closely involved in what was going on within LUPUS EUROPE.

That realisation is what eventually decided me and, with assurance that I wasn’t applying for a specific role – I felt so unsure of what I would be able to do – I decided to take the plunge and put my name down.

It is obviously an important commitment but it is also a very flexible one. Every trustee does what they are able to do and the whole team works together to best harness the skills each person may have.

Our conference calls and face-to-face meetings are busy and animated. We are all very much encouraged to give our opinion. We don’t always agree but work together to find the best way forward. The amazing thing about being involved in any LUPUS EUROPE and patient advocate activity is the ‘energy’ in the room. People may expect a room full of sick people to be a dull place but nothing could be further from the truth. Of course, as a lupus patient, I get tired, but that energy truly makes me feel alive!

I have found this challenge to be very rewarding personally. I am able to bring unused skills back up to date and have discovered more about how I can develop as a person and what I’m really good at. I work with a wonderful and dynamic team and have met many other like-minded people through events I attend on behalf of LUPUS EUROPE.

And the best thing… I’m helping move things forwards for lupus patients across Europe.

Meet the Lupus World at the ICL in Vienna

Hofburg at night

Hofburg by night – ICL and Lupus Summit venue 2015

Today is World Lupus Day, a great time to be thinking about bringing the Lupus World together. 

‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with the LUPUS EUROPE secretariat for further details secretariat@lupus-europe.org

LUPUS EUROPE’s convention will take place from 4th-6th September, following on directly from the ICL congress. We hope that this organisation will mean that many of our members also have the opportunity to visit the ICL. 

Happy World Lupus Day! 

11th International Congress on Systemic Lupus Erythematosus

About being a trustee – Kirsi’s story

From the invitations to the convention which have just been sent out, you will see that there are two trustee positions up for election in September of this year. Having good candidates to carry on our work is extremely important, as is keeping a dynamic team and that means bringing in fresh people. Becoming a trustee may seem daunting to some, so we have decided to tell our own ‘trustee stories’ to help you gain insight into the role of a trustee. Beginning with one of our newest trustees, Kirsi Myllys, our treasurer.


“My first contact with the LUPUS EUROPE Trustees took place in Larnaca at the Convention held in Cyprus in 2012. There and then I made a promise to organise the 2014 convention in Helsinki. I knew this was a big promise to make, but it all happened and everything went well. The following year I had several skype calls with the Trustees and then in the summer of 2013, they invited me to a Trustees’ meeting in Amsterdam. That was a dream come true – truly.

In Amsterdam I felt I was one of them, one of the group. The team was so efficient, there was a lot to go through, all concerning lupus, and a couple of times I had to leave the room, when the Trustees discussed and decided on something that wasn’t meant to be heard by a non board member. In the end, I thought it seemed so great what LUPUS EUROPE is doing that I wanted to be more involved and do my bit. I have no illusions about it, I know it means hard work, but it’s all in the name of lupus.

Now that I’m one of the Trustees I get to do what I enjoy most, which is organising events and accounting (I finished my retraining in accounting in 2014). There is so much I need to learn, but one step at a time and in a while I will even be able to memorise the names of all the different organisations that Lupus Europe is involved with without any effort and notes. The best thing from my point of view is, however, that I know there is always someone there to help me out, if I feel I cannot do something. This feeling is new in my experience of voluntary work 😀