Factor VII Patient Retreat |
1. Program Rationale
As an individual with Factor VII deficiency, I have faced a lifetime of health issues that physicians, friends and family often do not understand. I have attended numerous conferences and workshops at a local, regional and national level, but the majority of the focus is on individuals with Hemophilia A (FVIII deficiency), Hemophilia B (Factor IX deficiency), or vonWillebrand Disease. Although I understand that each of these deficiencies are more prevalent than Factor VII deficiency, there needs to be educational programming to address our concerns. I am reaching out to you for what I think is an exciting opportunity to provide this programming.
Many of us have benefited from attending Inhibitor Summits and appreciate the education and networking they provide. Although we don't quite fit into the Hemophilia with Inhibitors world, our use of Novo Seven as a means to control bleeding links us to this patient group. It has been unifying to meet other people in this community who struggle with the same issues that I do. There is so much we can learn from and share with each other – we just need the right opportunity and environment to do that.
That is why I am in the process of submitting a grant request that, with funding, will provide us with our very own Factor VII retreat program. I'm not ready to share locations or dates just yet, but will keep you informed. I really need feedback as a community on the idea and ask for your help to assist with programming topics.
Because I want to move this idea along as quickly as possible, I ask that you complete the survey at your earliest convenience.
I am enlisting the support of my dear friends from Comprehensive Health Education Services to assist me with this endeavor. As the lone founder and director of LadyBugs Foundation, I can't do it all! We welcome any additional thoughts, ideas or questions you have. Please feel free to contact either of us at any time. Thanks very much for your help!
Best wishes,
Barb Forss
info@ladybugsfoundation.org
360-312-8334
Janet Brewer
jbrewer@comphealthed.com
781-733-5970
Many of us have benefited from attending Inhibitor Summits and appreciate the education and networking they provide. Although we don't quite fit into the Hemophilia with Inhibitors world, our use of Novo Seven as a means to control bleeding links us to this patient group. It has been unifying to meet other people in this community who struggle with the same issues that I do. There is so much we can learn from and share with each other – we just need the right opportunity and environment to do that.
That is why I am in the process of submitting a grant request that, with funding, will provide us with our very own Factor VII retreat program. I'm not ready to share locations or dates just yet, but will keep you informed. I really need feedback as a community on the idea and ask for your help to assist with programming topics.
Because I want to move this idea along as quickly as possible, I ask that you complete the survey at your earliest convenience.
I am enlisting the support of my dear friends from Comprehensive Health Education Services to assist me with this endeavor. As the lone founder and director of LadyBugs Foundation, I can't do it all! We welcome any additional thoughts, ideas or questions you have. Please feel free to contact either of us at any time. Thanks very much for your help!
Best wishes,
Barb Forss
info@ladybugsfoundation.org
360-312-8334
Janet Brewer
jbrewer@comphealthed.com
781-733-5970