Greetings everyone! I am pleased to write you as we enter another phase of National Fabry Disease Foundation development. This phase is marked by our new website with many more features to facilitate community involvement and information sharing. We have benefited greatly from the experiences and ideas of so many of you in our community and from many lessons learned as we implement various programs. We have seven years of experience as a nonprofit support organization behind us now. I can hardly believe it either; time goes by so quickly. It seems like just yesterday that we embarked on this exciting journey.
In my role in the organization, I still rely on many things I learned and many business practices we embraced In my previous employment. One of those practices is having a goal of continuous improvement in our organization using a plan-do-check-act model. From our own experiences and from community input we develop and revise programs and then check to determine whether the programs are successful in achieving their intended goals and objectives.
My personal preference was and is to always seek ways to improve our programs and services combined with efforts to discover and adopt new programs that have potential to significantly improve our effectiveness. Our effectiveness and ultimate success are measured by how much we can contribute to helping people with Fabry disease live better and longer lives.
Please provide feedback about our programs and about your experiences with Fabry disease. We really appreciate your comments and suggestions. Together we can help people with Fabry disease live longer and better lives and help individuals and family members cope with the burden of living with Fabry disease.
Thank you for your time and consideration!
Proudly serving the Fabry community and always available to speak with you at 800-651-9131.
NFDF Founder and President