

	FABRY INTERNATIONAL NETWORK (FIN) MEMBER SURVEY – INPUT TO DEVELOP FIN PRIORITIES FOR 2009 AND 2010

	Thank you for completing this important survey to assist the Fabry International Network in developing its priorities for 2009 and 2010. This survey is also one tool to improve two way communication between the board and all FIN member organizations. The survey should not take any longer than about 15 minutes of your time.

	The primary aim of the Fabry International Network (FIN) is to facilitate collaboration between organizations to support those affected by Fabry disease. FIN seeks to do this primarily through enabling communication, promoting best practice and acting as an independent forum for Fabry Associations and patients around the world so that Fabry patients, their families and caregivers may be spared unnecessary suffering and may live longer, healthier lives.

	This objective of this survey is to obtain input and feedback from the current 20 FIN member organizations the majority of which were represented at the 1st FIN Conference held in Amsterdam early in 2008. Much valuable information was provided and the objective of this survey is to allow the FIN member organizations an opportunity to help the FIN board focus on the main issues and priorities for 2009 and 2010. This survey should be completed by the leader(s) of the FIN member organizations who either live with Fabry or know it well. In addition please ask your organization’s board of directors to complete this survey as well as others within your organization you believe the FIN board should hear from.

	Another FIN survey is being prepared and is a much broader survey targeted not only for the leader(s) of FIN member organizations but individual Fabry patients, family members, caregivers and other stakeholders.

	All responses are completely confidential and anonymous. To preserve the anonymity of responses, your name and contact information will not be used in any way other than to send you a copy of the results.



	Please complete survey online by June 10, 2009
	Thanks so very much and look forward to hearing from you.