Fabry International Network (FIN)

December 2006 - Newsletter 

Hello FIN Members

 

It has been far too long since the FIN board has been in communication with you the members. The FIN board had its first meeting on February 25, 2006 and have meet every six to eight weeks via telephone conference call. The last board meeting was November 27, 2006.

 

You should have received a letter of introduction of FIN from the board, back in June. The sample letter prepared and is attached for your reference. In addition the initial statues of incorporation, is attached, as FIN was registered as a non-profit organization in the Netherlands.

 

According to the statutes, the financial year of FIN shall run parallel to the calendar year. The financial statement as well as proposed budget for 2007 is attached for your approval. Current balance of FIN is €3100. There were no costs incurred for FIN in 2005. Please register your vote to either support or reject the draft budget.

 

Rob is in the process of securing director liability insurance for FIN.

The board has developed a long term strategy and plan for FIN which continues to be:1)      Funding for FIN – Budget developed and proposeda)      In order to be neutral in all meetings solicit sponsorship and funding from at least two sources.b)      Current assets to be used for conference calls for the board and website development

c)      No cost to become a member of FIN

 2)      Website Developmenta)      Making ourselves known to those in the world diagnosed with Fabry disease and appropriate patient organizations. I.e. Brochure/Who/What/How

b)      Setting up a program to make Fabry disease known to more physicians, by providing documentation, information and fact sheets as well as giving lectures

 3)      Meetings with FIN members and developing other membershipa)      Finalize Vision/Mission of FIN with FIN membersb)      Educate Fabry Patientsc)      Helping to found national patient organizationsd)      Having regular meetings with members to share information and knowledge.

e)      Promote a single world wide Fabry International Conference

 

The board has been providing detailed background and information to various organizations and companies for sponsorship and support including Shire Europe and USA, Genzyme Europe and USA, Amicus Therapeutics and Actelion Pharmaceuticals. Progress is slow but quite positive in most cases. As the new year approaches, the FIN board is confident that in 2007 FIN will secure support, funding and sponsorship from at least two sources to ensure our key and basic goal to ensure neutrality in all meetings, communication and support for various international Fabry organizations is never in question.

 

The board has agreed that one of FIN’s priorities is to develop website. If any member can assist in this area please let any of the board know. Your assistance and expertise would be greatly appreciated as well as any information or articles you would like to add on the website.

 

Approximately 15-16 days of support from Louise O’Mara of the IISC is available however very little if any services has yet been utilized by the board. There have only been some brief conversations and discussions on how she could assist FIN in completing its Mission and Vision statements and other initiatives.

 Your input and questions are always welcome. The FIN board looks forward to working with you in an effort to share the common vision to assist Fabry patient organizations throughout the world to improve the lives of those diagnosed with Fabry disease as well as their families, relatives and/or caregivers. Thanks for your support. FIN Board of Directors
Chairman: Rob van der Laan Netherlands
Vice Chair Rune Sedal Norway
Secretary: Ed Koning Canada
Treasurer: Kees Bosman Netherlands

Director: Marlene Koning Canada