In 2006, the WFH identified a growing need for training our member national hemophilia organizations (national member organizations, or NMOs) in the area of advocacy and lobbying. Consequently, we introduced a program of targeted Advocacy Training workshops from 2006-2010 for all regions of the world, supported with funding from Baxter.
Objectives
- The primary objectives of the Advocacy Initiative were to:
- Alert participating NMOs to issues facing the hemophilia community in their region;
- Introduce the advocacy process and the steps taken to carry out the process;
- Provide both qualitative and quantitative information surrounding broader issues to promote more effective advocacy;
- Support participants to enhance advocacy campaigns at the national and international levels within their region;
- Help improve advocacy skills;
- Support each NMO representative in developing an actionable national advocacy/lobbying campaign;
- Identify the various stakeholders and examine roles and approaches to them;
- Identify patient group advocacy “leaders”;
- Discuss and improve medical/lay cooperation; and
- Educate participants on issues related to good governance of their NMO.
Activities
The following eight Advocacy Training workshops for NMOs were held around the world. Click here for more information on these workshops.
- European NMO Advocacy Initiative — Amsterdam,
the Netherlands, February 9-12, 2006
- Central European Advocacy Initiative — Warsaw, Poland,
March 8-11, 2007
- East European Advocacy Initiative — St. Petersburg, Russia, November 8-11, 2007
- Middle Eastern NMO Advocacy Initiative — Dubai, United Arab Emirates, November 19-22, 2008
- African NMO Advocacy Initiative — Cape Town, South Africa,
June 4-7, 2009
- Established NMO Advocacy Initiative — Montreal, Canada, September 23, 2009,
- Latin American NMO Advocacy Initiative — Lima, Peru,
November 12-15, 2009,
- Asian NMO Advocacy Initiative — Manila, Philippines,
February 23-26, 2010
Impact of the WFH Advocacy Initiative
 In all, 191 representatives from 107 hemophilia organizations (96 out of the current 118 WFH NMOs) attended the trainings. These workshops allowed for representatives from each country to discuss the challenges they face in their efforts to improve care and develop strategies on lobbying and government relations. Through this initiative, many NMOs have become more effective and successful in advocating for improved care in their countries.
One of the main benefits of the Advocacy Initiative was the development of regional networks and the sharing of experiences. The various trainings helped to create local, regional and international networks within and between representatives of each workshop. At the end of the regional workshops, representatives of each NMO stated publicly how much they had appreciated the opportunity to discuss their own experiences and learn from others. They all felt that the workshops allowed them to gather new information and reinforce their skills.
For more information on the Advocacy in Action program, contact Amanda Bok at abok@wfh.org.
Advocacy in Action Program
Last Updated July 2010
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