Fabry International Network (FIN) Top PrioritiesResults of FIN Conference of February 2008 in Amsterdam
The FIN board has developed a list of key priorities and action items to focus on in the next 12 – 18 months which include:
Develop literature services i.e. language translation and data in simple form - Be the preferred worldwide source of information or library for individuals affected by Fabry. With the assistance of all stakeholders, FIN should provide correct and adequate information and educational material as well as medical and technical date in a simple form.
Improve 2 way communications with current members so that FIN becomes more effective in collecting and sharing worldwide information about Fabry to individual Fabry patients and their families through their local Fabry organization. I.e. Improve networking through use of improved website via blogs, communities, electronic library and sharing information
FIN Survey - Development and completion of FIN survey to be sent to all FIN member organizations and stakeholders seeking input on needs of patients, family and care givers for input to FIN board on developding its priorities
Prepare and issue at least 2 FIN newsletters by June 2009
Grow FIN membership by another 3 Fabry country patient organizations by June 2009.
Medical Advisory Board to prepare at least 2 articles and updates on the disease and treatments every 12 months.
Secure sponsorship and support from at least one more organization or company by June 2009.