Rune Sedal and Anita Kjersheim
Fabry Pasientforening, Norge
Søre Titlestad 111
Dear Rune Sedal and Anita Kjersheim
Re: Fabry International Network - Update and Invitation
FIN Conference and General Meeting February 8-9, 2008
Hope you are well and that the Fabry Pasientforening, Norge has made progress in Norway to improve the lives of Fabry patients, family members and care givers. We are writing to you as the current Fabry International Network (FIN) member organization representative, and have some exciting news to share.
As you are aware the primary aim of FIN is to facilitate collaboration between organizations to support those affected by Fabry disease. It seeks to do this primarily through enabling communication, promoting best practice and acting as an independent forum for Fabry patients around the world so
that Fabry patients may be spared unnecessary suffering and may live longer, healthier lives.
Back when FIN was first established on October 20, 2005 in Geneva, Switzerland we agreed that the principle foundation of FIN is to be neutral and independent in all of its communication, action, meetings and decisions worldwide. In order to ensure FIN is transparent, independent, neutral and operates with integrity with the patients' needs its only focus, we agreed that nothing could be accomplished until such time as FIN is supported and
sponsored by two or more pharmaceutical companies. This was accomplished nearly six months ago when three pharmaceutical companies agreed to jointly sponsor and support FIN and its mandate. In fact today FIN has now 5 sponsors including Actelion Ltd, Amicus Therapeutics, Genzyme, IISC and
Sanders and Clients Consulting.
We are also very pleased to announce that the FIN website
fabryintnetwork.com is now operational. It requires some upgrades and additions so please provide comments and suggestions as well as links to other organizations and websites that you believe should be added.
This is all great news however the FIN board of directors is pleased to announce that sufficient funds will be secured to enable the FIN delegates to meet together in Europe. The board would like to invite you to the first FIN conference and general meeting in Amsterdam, Netherlands on February 8-9, 2008 at the Hotel Schiphol A4, Rijksweg A4 Nr.3 2132 MA Hoofddorp.
There is complimentary shuttle bus at bus stop A9-A13 every 40 minutes between the hotel and the airport.
Current plans are to invite participants from 18 member countries. The draft agenda is enclosed and includes guest speakers and experts who will provide an update on Fabry disease, both enzyme replacement therapies, all three
Fabry registries (Canada has its own third registry) as well as updates on developments on new and emerging drugs, technologies and therapies. The meeting will also include facilitation by Louise O'Meara of IISC to assist in finalizing FIN's mission and vision as well as the FIN general meeting
items including review and approval of financial statements, 2008 budget and election of the board of directors. Note that the meeting will be conducted in English and hope that this will not effect your participation.
The cost of your travel, meals and accommodation for one night hotel (those from EU countries) will be covered by FIN. Please inform FIN of the estimated costs for airfare prior to actual booking as the budget is tight.
FIN would like your confirmation of your attendance by December 31, 2008 if possible. Meeting will begin at 13.00 h (CET) on Friday Feb. 8th to allow travel in the morning and meeting will conclude at 13:00 on Saturday to allow travel home in the afternoon/evening.
As the current agenda is still only in draft form, please provide any aspect of Fabry disease that is of a concern in your country as well as any suggestions or input. We want this meeting to be as interactive and informative as possible. In an attempt to do this, we request that you prepare some documentation about your organization that can be shared with the other members as well as a 3-5 minute presentation about what is happening in your country. As the FIN website is now operational we would
also like to add a summary of the various member organizations as well as a link to your organization website.
FIN exists to facilitate collaboration between organizations to support those affected by Fabry disease, not to interfere or compete with your Fabry organization. As the FIN member delegate of the Fabry organization in your country, we request that you take an active role by not only communicating
back to your organization what you learn at the meeting but provide ongoing updates and communications to FIN and its members as well as assist with the various tasks and activities of FIN. In an effort to have FIN grow into a truly global patient organization and network to improve the lives of Fabry
patients, their families and care givers, the board requires your help and expertise.
We appreciate your input and suggestions and look forward to seeing you in Amsterdam on February 8, 2008. Hope to hear from you by December 31, 2007 that you will be able to attend.
Ed Koning on behalf of FIN Board of Directors
Fabry Patient Association - Norway
FSIG - Netherlands
President, Canadian Fabry Association
FIN Board Member
Canadian Fabry Association
Enclosed: Draft Agenda