Annual Report of the board 2017/2018

Chairman’s Note

The adoption of this third Annual Report for Europa Uomo at the 2018 General Assembly near Dublin, will mark the conclusion of my two three-year terms on the Board.  The past six years serving the membership in various offices of Europa Uomo have been both an honour and privilege.  My thanks go to all of you, and your colleagues at home for their support.

When I came onto the Board in 2012, my basic objectives were the same as with my work for Tackle in the UK, viz., to improve the way we work as an organisation and to continue to work so that men get the right treatment at the right time.  As I review these past six years I recall how we struggled, through much debate and confusion, to get our statutes into sufficient order to finally get ourselves legally registered as a Belgian not-for-profit.  I was Treasurer for a time and being then responsible for our funding arrangements, I was concerned at how the lack of a business plan might hamper us, financially and organisationally, in the future.  There were also issues associated with our handling of the transition from the founders who built the organisation since 2003.

I had to come to terms with the fact that we are all volunteers and that a small Board could not do it all.  To manage the change process, we needed to be open and transparent with our members and our stakeholders.  Our relationships with some of our stakeholders was mixed.  It took some years of patient diplomacy to ensure that we improved and developed our relations with the likes of the urologists (EAU), the medical oncologists (ESMO), the big patient groups like ECPC, the intergovernmental bodies like ECCO, and of course one of our most important links: the European Medicines Agency (EMA).  With these and others we continue to forge our links and to make for a more meaningful relationship on behalf of prostate patients.

The other side of the coin was to improve our internal working.  This meant examining honestly our strengths and weaknesses by means of a far-reaching review.  This led to a strategic plan adopted by the 2016 GA and we are now well advanced on its implementation.  Within our democratic structures, we also must give consideration to orderly succession planning in the same way as we do financial planning.  It has been my good fortune to work with a Board who have been prepared to face the challenges, including its own renewal.

With a part-time Board of volunteers, it all takes time and effort, but I hope you are beginning to see the fruits of this.  In the coming months we are putting in place a development programme for eastern Europe with an appointment in Warsaw, and which I think will raise our visibility and help grow our organisation in that part of Europe.  We are also beginning to introduce new branding.

In addition to all these organisational matters, the reasons for our existence have to be kept to the foreground.  With our increased access to policy and decision-makers we constantly raise our concerns about the inequality of treatment across the continent, and the wide variation in the access to drugs.  While this has been one of my personal concerns, I have also sought to encourage our member organisations to better prepare themselves to deal with issues that are facing them in their own countries, I sought to give more people insight into the work of our organisation through the introduction of Liaison Officers.  And we move another step forward with the development of our own training programme, a pilot for which will be tried out at this GA in Dublin.  Some of our members do this already, but at the Coalition level we must do more.

Improving communications was high on my agenda and dealing with it took longer than I would have liked.  Although we do our business through the medium of English, it is not easy to communicate in written form with so many for whom reading and writing in English can be done only with difficulty.  We consulted in 2016 with members and one result was the weekly Update which commenced in February 2017 and which has drawn very favourable comment from stakeholders.  But this was only one step.  We also commissioned a more far-reaching review, the results of which are currently under consideration by the Board.

Raising awareness of prostate disease, especially prostate cancer is one of our core activities.  It is vital that we eliminate the spectre of so many men being diagnosed with advanced prostate cancer.  It is not necessary, it is preventable, and a large proportion of prostate cancer deaths are avoidable.

Europa Uomo is now recognised as the voice of prostate patients in Europe.  Our national member organisations continue to grow in influence in their home countries.  Prostate patients are now experiencing a greater involvement at all levels.  In Europe much of the patient involvement is unseen, but patients now participate, not only in the important committees of the EMA and EAU, but also in the work of committees that review applications to market new drugs, applications from pharma seeking advice from the EMA on matters that have not yet reached marketing application stage, competitions for research funding, guidelines for prostate cancer diagnosis and treatment, and many others.  I am confident that all this work is a reflection of our growing expertise as patients and for that I thank you all.

This third Annual Report tells the story of our work over the year on behalf of patients.  It reflects our commitment to the next generation of prostate patients, it is testimony to our flexibility and to our drive to increase awareness in others and to improve ourselves by training and development.  This Report also gives a more detailed account of the way we are trying to take forward the projects approved by the 2017 GA.

My thanks to all our sponsors for their funding, thanks also to Anja Vancauwenbergh and Brigitte Dourcy-Belle-Rose for their support to the Board.  Working in partnership with all stakeholders is the way forward for our organisation and with this in mind my thanks also go to the EAU represented by Prof. Hein van Poppel, Dr. Alberto Costa of the European School of Oncology, and also to Prof. Louis Denis and Dr. Luc De Wilde of OCA.

The challenges ahead in the areas of funding, development of our membership and role in our European family are considerable.  The Coalition will have to deal with the inequalities of access to treatment and drugs.  These new treatments and drugs, which are now coming to market, come at a real cost to the health budgets in all countries and we must strive, with our stakeholders, to ensure that this issue will be tackled fairly among future prostate cancer patients.

Finally, my thanks go to the officers, the Board, to Tackle UK, and our membership who do the work on a voluntary basis in fighting for men and families who are suffering from this silent disease.  The current Board, working together, have endeavoured to move Europa Uomo into the next phase as the voice of all prostate patients in Europe.

I wish the next Board all the best for the future and in the fight for prostate patients.  For myself I will continue the fight as a member of the Board of ECPC.

Ken Mastris

Chairman

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