 Fostering the growth of emerging National Member Organizations (NMOs) in developing countries is one of the most important objectives of the WFH. The Hemophilia Organization Twinning program seeks to actively encourage a network of bilateral cooperation between hemophilia organizations around the world.
Program Objective
Promote and strengthen existing capabilities of emerging hemophilia organizations to achieve more advanced and efficient hemophilia care and organization.
Well-established National Hemophilia Organizations and chapters in developed countries have expertise, knowledge, experience, and resources that can be used to help emerging organizations to attain a level of activity which can be of direct benefit to individuals with hemophilia.
The twinning program establishes links between hemophilia organizations in developed and developing countries to share expertise in such areas as patient advocacy, management, fundraising, public relations, and all aspects of work involved in operating a successful hemophilia organization.
Description of Program
Starting with existing informal relationships, partnerships are negotiated on the grounds of geographical, linguistic, cultural, and political affinities.
The established hemophilia organization can use its knowledge, experience, publications, and personnel to assist the emerging organization in a manner agreed upon between the two organizations. Once this voluntary relationship is officially recognized by the WFH, a continuous flow of organizational information and activity is established between the two twinned organizations. In essence, any type of activity that can improve the organization of the emerging NMO may be included in the program.
Activities undertaken by twins may include to:
- Establish communications / consultations between partners
- Arrange assessment visits to collect information and review the situation / needs
- Supply medical equipment, educational material, treatment products
- Arrange training programs for emerging organization members on fundraising, membership development, publications, and lobbying techniques, depending on identified needs
- Organize a hemophilia meeting, annual event, educational program for patients / parents, or recreational activity such as a summer camp
- Establish networks between members
- Publish hemophilia educational material in a particular language
- Arrange personnel exchanges
The Hemophilia Organization Twinning Program is a framework within which each partnership, analyzing its own needs and priorities, can implement the most suitable activities for itself. Essentially, this program is a bilateral relationship that is encouraged and assisted by the WFH.
Selection Criteria
- A number of requirements are considered necessary for the established hemophilia organization:
- A willingness to allocate time and energy to the twinning partnership.
- The capacity to take on a twinning project.
- A clear sense of why it is embarking on a twinning project – i.e., what it thinks it can contribute to it and what it thinks it can learn from it.
- Institutional and volunteer-based support.
- For the emerging hemophilia organization:
- A key person working in the field of hemophilia.
- Strong commitment to embark on a twinning project.
Application Procedure
Standard application form and action plan proposals for the twinning program should be sent to the WFH headquarters in Montreal. This form includes the planned objectives of the twinning and the proposed working plan of action. Proposals should be written in close collaboration between the two twinning partners and signed by the President or Chair of each organization.
Forming twinning partnerships that have visited their potential twinning partner prior to applying for a formal WFH recognition will be given preference. WFH offers financial assistance to cover the costs of this first assessment visit to the emerging twinning partner. Organizations interested in doing assessment visits are required to fill out the Organization Application Form for Assessment Visits and send it to the WFH headquarters.
The WFH Twinning Committee reviews proposals and selects successful twins.
Reporting Requirements
A standard narrative and financial report describing the activities of the twinned societies in that current year should be prepared and submitted jointly by both partners, on an annual basis, to the WFH headquarters using our standard reporting form.
This report, including a plan of action and application for additional funding for the following year, should be sent to WFH headquarters during the month of November of each year. The financial assistance provided for the partners will be reviewed annually, subject to the results achieved as described in the program reports.
WFH Support to Twins
WFH support to twins includes:
- Assisting organizations in finding a twinning partnership.
- Supplying WFH publications and manuals instrumental in twinning activities.
- Facilitating the sharing of experiences between twinning partnerships, including twinning meetings.
- Financially supporting the partnerships through annual payments, grants, and funding for assessment visits.
- Guidance is also offered to twinning partnerships on an individual basis, including close monitoring, possibility of accompanying twinning partners on assessment visits, and providing our step-by-step guide to twinning.
Budget
- An annual financial allocation of US $1,500 is provided to support the partnership expenses between the two hemophilia organizations (i.e. communication costs such as telephone, fax, mailing / travel expenses, etc.). WFH headquarters will make this payment at the beginning of each year.
- WFH also offers additional financial assistance to strengthen its emerging National Member Organizations involved in the twinning program by awarding twinning project grants. The twinning partnerships need to apply in writing for those grants in November of each year. Grants of varying sums are awarded to selected hemophilia organization twins each year, depending on the proposed project. If awarded, WFH headquarters will make this payment along with the annual financial allocation at the beginning of each year.
- New twinning partnerships will receive the first financial allocation immediately following the approval of their twinning partnership by the Twinning Committee, in order to allow for better planning of the twinning activities from the very beginning.
Duration
All partnerships will be fully reviewed after a period of three (3) years. Generally, partnerships can be supported financially for three consecutive years to allow the creation and funding of new partnerships in other parts of the world and to cover the widest possible geographic distribution. However, if twinned organizations do not wish to end their partnership after this period, continued funding for additional year(s) will be considered, following the recommendations of the Hemophilia Organization Twinning Committee.
Hemophilia Organization Twin-of-the-Year Award
Each year, the WFH Organization Twinning Committee grants an award to the most active and productive partnership on the basis of the reports of the previous year’s activities submitted by the participants in the program.
For more information about twinning, contact: nhope@wfh.org
 The WFH gratefully acknowledges Wyeth's sixfth year of support of the WFH twinning program.
Last Updated July 2006
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