FIN annual report 2009

The year of 2009 will be described as the year where the FIN board really realized who we are, how to move forward and seeing FIN as a whole “product”.

With wonderful help from our facilitator Louise O’Meara and our FIN partners, we have worked out a comprehensive document with our Vision, Mission, Values, Guidelines, Aims Objectives, Actions and Tasks.

We have been working with these documents over time and already from the start of FIN in 2005. Especially from the spring of 2009, we have managed to prepare a significant basis, where hopefully the AGM 2010, will give FIN the approval signature.

Starting up FIN in 2005 we have had a magnificant progression, but always with a conscious about FIN being too in warded. This momentum has been a burden over time, and that’s why FIN decided to change direction.

Of course, building up awareness of   FIN and its board, together with our FIN partners, takes much time. Shire came fully in, as a FIN Industry Partner in 2009, and than it was much easier to go on with the FIN process.

FIN is proud telling, that we do have FIN partners, who fully trust us and over time have  become very well known to FIN, within our basic view.

A trust that is necessary for any collaborating partnership, voluntarily or professionally.

In September 2009 FIN had the first joint face-to-face meeting with our FIN partners (MAB and FIN Industry with Amicus, Shire and Genzyme), where we together agreed to go on with joint meeting, also in future.

From this stage we also decided to refer to our FIN MAB or FIN Industry, as FIN partners or FIN Industry Partners. 

The next and second joint telephone conference meeting was arranged in November 2009.

The FIN MAB, did also include with the 5th member, Colleen McNeil from Canada.

To be engaged from the early start with the Genzyme shortage from June 2009, showed also that our FIN Industry partner, Genzyme, took FIN serious and invited us into the Genzyme Patient Group Advisory Forum.

FIN looks forward to be more outward focused in 2010. Together with our FIN members and FIN partners, try to reach more out working together with FIN members such as your selves and refine the potential benefit of having FIN a Fabry organisation, working worldwide.

The best way to reach our goal is to improve the two-way communication, and together we can achieve such matter, for sure.

Kind regards
Rune Sedal
FIN President 2009 on behalf of the FIN board of directors