Advocacy Program

The World Federation of Hemophilia (WFH) Advocacy Program was launched in 2006 to help national patient organizations bring about change through advocacy and to strengthen the voice of those around the world who are impacted by inherited bleeding disorders.

This program provides hands-on training, coaching, and tools to encourage as well as empower national member organizations (NMOs) to implement successful advocacy projects and activities. The program was supported by exclusive funding from Shire from 2006 to 2015.

Objectives

Here are some of the objectives of the Advocacy Program:

  • Assist in developing advocacy skills through workshops
  • Provide NMOs with tailored advocacy training
  • Develop tools to support national advocacy initiatives (for example, monographs, comparative data, and fact sheets)
  • Support specific NMO representatives in developing and implementing a national advocacy or lobbying plan
  • Provide experienced support throughout the life of the advocacy initiative, including on-site visits and coaching, direct lobbying support, and back-up administrative public policy support

Outcomes, Results, and Impact

The WFH Advocacy Program has realized the following accomplishments:

  • Conducted eight regional advocacy workshops—covering all WFH regions—to train 191 representatives from 107 hemophilia organizations (2006 to 2010)
  • Held twelve multi-regional workshops to train 217 representatives from 115 hemophilia organizations (2010 to 2015)
  • Allocated 32 advocacy project grants to NMOs leading to improved care and increased government support for bleeding disorders
  • Developed new advocacy resources and tools
  • Presented three Advocacy Recognition Awards to countries that completed successful advocacy campaigns and used strategies that could be applied to other contexts and locations
  • Established several local, regional, and international networks
  • Provided opportunities to share advocacy experiences and best practices among patient organizations

For more information about the WFH Advocacy Program, contact the WFH at programs@wfh.org.

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