Good Morning NHF & HFA,
I'm reaching out to express my support for the commitment CSO letter that resulted from the August Meeting in St. Louis.
The aims of the letter include NHF and HFA leading in a way that fosters trust. This transparency would be fostered by including a CSO voting seat on the boards. Further, a common voice with strategically planed communications is essential and should work towards a near-term unification via merger.
For effective advocacy, there needs to be 1 voice at a federal level. Additionally, annual advocacy would be aided by local grants and consideration of state-level lobbyists as well as a combined advocacy days in 2020.
Chapters would benefit from support for focused activity, shared resources and streamlined national help. For programming, less duplication, expanded partnerships and tightened logistics will promote greater education and good.
Funding diversification is highly important and clear focused goals should align with efforts toward more charitable healthcare giving. Research remains vitals but the role of NHF and HFA should be that of a organizing body and collaboration should encouraged among diverse entities and distilled back to the community.
These are important points to move our community forward and I hope they are met with great consideration.
Best Regards,
Stephanie Bauman
Board of Directors,
Gateway Hemophilia Association