Mission
The Chapter Staff Organization’s (CSO) mission is to provide peer support to local chapter executive leadership; establish mutual working relationships with national organizations; assist CSO members in programs for chapter and resource development; facilitate CSO member skill development; and maintain a unified, independent voice on behalf of all CSO members.
History
In the mid-1990’s the National Hemophilia Foundation (NHF) had an organized sub-organization called the Professional Staff Organization (PSO). The purpose of this formalized PSO was to provide a way for the NHF to communicate with and support its affiliates (chapters) around the country and to provide a mechanism for the chapters, as a group, to communicate with "one voice" to the NHF. Membership in the PSO was not based on a standard of service met by any chapter, but it did serve a function both for the NHF and its chapters across the country. The PSO had officers and bylaws, and the PSO members typically met as a group at regional and national meetings. It provided an organized way for chapter staff to learn from each other and stay connected on a regular basis. It helped chapters stay connected, with newer staff learning from experienced staff regarding programs, services and fundraising. The NHF provided in-service to the PSO when they were gathered at regional and national meetings, relying on the skills and talents within the ranks of the PSO and also providing education from speakers and presenters outside the PSO. The NHF valued the PSO and asked the PSO for suggestions for chapter program planning. There was a PSO representative, elected by the PSO, on the NHF Annual Meeting Planning Committee each year.
In 1999, during the NHF Annual Meeting Planning Committee process, it was communicated to the chapters that the NHF would no longer recognize the PSO as an organization connected with the NHF. A request was made by the PSO to the CEO of the NHF and to members of the NHF board to provide a meeting room at the 1999 NHF Annual Meeting site. The NHF provided the room and the chapters met and founded a new organization called the Chapter Staff Organization (CSO). This new organization would take the place of the now defunct PSO.
Members thought the new name would more accurately reflect chapter staff, many of whom were not "professionals," but rather volunteers. Bylaws were written onsite at the 1999 NHF Annual Meeting. The CSO continued to grow, hold regular meetings and provide in-service programming to its members, paid for in the early years by funds collected from the CSO members' yearly dues. By continuing to communicate with the NHF and national staff, an annual program of in-service for chapters was re-established by the NHF and a CSO delegate was once again asked to serve on the NHF Annual Meeting Planning Committee. The CSO was very helpful to the NHF during the HIV crisis. The CSO helped guide the development of both the industry and government compensations to those affected by AIDS, and the NHF Chapter Standard of Service which eventually led to the establishment of Chapter Charter Agreements. It was beneficial both to chapters and to the NHF to have this formal mechanism in place.
At every Annual Meeting, NHF recognized the CSO by providing a space at no charge for members to meet in private. The CSO had a business meeting on July 22, 2016 at the NHF Annual Meeting in Orlando, Florida. At the meeting a motion was made to dissolve CSO. A vote was taken and it was determined that CSO would dissolve. However the vote did not follow the procedures required by the bylaws so a new vote was taken in August 2016. The results were 14-11 that the CSO should not be dissolved but should strengthen its membership and get back to its roots of providing services to chapter leadership. In 2017, a committee of CSO members met to update the bylaws. The revised bylaws were presented and approved by CSO members during the NHF Annual Meeting in Chicago, IL on August 23, 2017.
Today, all of the members of the CSO are paid professional staff running successful organizations on the local level.
Membership
Any National Hemophilia Foundation (NHF) chapter or Hemophilia Federation of America (HFA) member organization is invited to become a CSO member. If an organization’s executive director works for a pharmaceutical or special pharmacy company, they are ineligible to become a CSO member. Please note there can only be one vote per chapter by the Executive Director or President of the board. To inquire about becoming a member please fill out this contact form.
Requirements
The Annual membership fee is $75 per organization. Checks can be made out to the CSO’s Fiscal Agent and sent to:
The Hemophilia Foundation of Greater Florida
1350 Orange Ave, Suite 227
Winter Park, FL 32789The CSO member chapter must participate in at least one conference call throughout the year.
A CSO members are required to meet at the CSO in person meeting at the NHF Bleeding Disorders Conference and/or at the HFA Symposium.
Benefits
The opportunity to be part of a collective and independent voice that represents the CSO member chapters.
Eligibility for a one-time annual $250 travel scholarship to NHF, HFA, or other educational conferences. This scholarship can be used only by EDs or staff members.
Access to an online and private CSO Facebook group.
In-person meeting at the National Hemophilia Foundation’s Bleeding Disorders Conference.
Access to CSO resources and templates that support member programs and services.
Ability to meet with peers in a safe and comfortable environment to share mutual concerns and issue.
Whenever speaking as a unified voice, the CSO executive committee will gather insight from the members. Using this information, the executive committee will be responsible for crafting the official letter or memo. CSO members will receive the information before the intended distribution date so that they can provide final input.