Ten years ago, the National Hemophilia Foundation’s (NHF’s) relationship with its chapters was fractured. There was little trust—on both sides—and as a result, patients and families were losing out. In 2005, NHF began a process of significant restructuring. It was clear that the national model needed to be modified to address both the shared and unique challenges facing chapters, and to better serve individuals with bleeding disorders and their families, regardless of where in the United States they live.
Working together with chapter leaders and volunteers, NHF’s senior management developed uniform standards and best practices for chapter operations. The ACT (Access to Care Today, Achieving Cures for Tomorrow) Initiative was then developed to operationalize the vision of these leaders in the evolution of NHF.
The five pillars of the ACT framework are:
• Government Awareness and Support
• Education for All Life Stages
• Access to Care at HTCs and Beyond
• Research and Training
• Strong Local Organizations
The ACT pillar of “Strong Local Organizations” was the most critical in addressing the other four pillars. However, more was needed than just robust sets of standards and goals to assist chapters in becoming more effective, and to rebuild NHF’s credibility as a national leader for people with bleeding disorders. Many chapters lacked confidence in NHF’s ability to truly understand chapter-level operations, and to provide effective training and guidance to address local challenges. To ensure successful implementation of this ambitious plan, NHF’s Chapter Services department was established in 2008.
Chapter Services staff provide hands-on support to chapters so they can better serve their communities. This includes coordinating requests for assistance, acting as a liaison to build relationships between chapters and HTCs, and helping to devise tools and resources to meet chapter needs. Chapter participation in national programs and attendance at nationwide events is at an all-time high. Training is offered through Regional Leadership Seminars and Board Development Summits, and during the Chapter Track at NHF’s Annual Meeting. Chapter Services creates meaningful content and serves as the information hub for marketing at these events.
The relationship between NHF and its chapters is stronger now than ever. (See “Fostering Growth,” p. 16.) The chapter network has grown from 34 six years ago to a record 52 chapters today, with the recent addition of the West Virginia chapter. An important outcome of that growth is that our patients and families are now better served—nationwide.
Joe Kleiber is senior vice president for chapter services at the National Hemophilia Foundation.