Hemophilia Daily

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Sunday, July 11 (PDF)

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Excerpt:

WFH global training for national patient organizations focuses on the future

Over 100 participants representing patient organizations from 86 countries gathered in Pilar, a small town on the outskirts of Buenos Aires, for the World Federation of Hemophilia´s sixth Global Training from July 7 to 9. Through a wide variety of sessions targeting youth issues, new online technologies, and clinical research, to name a few, the focus of this year´s meeting was looking to the future.


More than 100 representatives of patient organizations from 86 countries gather in Pilar July 7-9 for the WFH's sixth Global Training.

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“There was active involvement from the youth delegates in helping shape discussions on key issues,” said Cesar Garrido, WFH executive member. “We are very pleased with the excellent participation throughout the NMO training from all delegates involved.”

WFH president Mark Skinner and executive director Claudia Black updated participants on the WFH´s new strategic goals for the next three years. These include developing programs for youth; using new communications technologies to raise awareness and engage stakeholders; developing a new research agenda for the WFH; and preparing for the WFH’s 50th anniversary in 2013.

In a session dedicated to youth issues, participants explored themes that concern young adults as well as the challenges patient organizations face in trying to engage and prepare future leaders in the bleeding disorders community.

“Young members are integral to the future of NMOs,” said Deon York, president of the Haemophilia Foundation of New Zealand; yet York said many hemophilia organizations are having trouble engaging young people.

“Even with treatment products, we can have pain, disabilities, and discrimination,” explained a young man from Nicaragua. “This has a psychosocial impact. You just want a normal life.”

Making activities interesting and relevant and providing guidance and mentoring were suggested as ways to engage youth in every community. The WFH provided grants to 16 young people with bleeding disorders to attend the meeting, as part of its leadership program to engage tomorrow’s leaders.

The clinical research session focused on the importance of research to improve care for all people with bleeding disorders. The roles of patients, clinicians, and patient organizations in contributing to this research were also discussed. Participants learned that a critical role for the NMO is to educate patients about new and ongoing clinical trials and ensure they are well aware of their rights if and when they choose to participate.

Other topics included online communications strategies, where participants discussed how social media and other online tools can be an effective way to build community and engage supporters; conflict resolution, which highlighted ways to identify, anticipate, and resolve discord; cooperation with local organizations, which highlighted the advantages of building partnerships within and outside the bleeding disorders community; event planning; and a discussion of the challenges and opportunities of the WFH twinning program.

Advocacy in action

Building on the foundation of the successful advocacy initiatives that ran from 2006 to 2010, the WFH has begun a new phase of advocacy programming. Training for member organizations has become a mainstay of WFH programs at both global and regional levels. Of the countries involved, 86% have achieved or partially achieved results from the advocacy action plans they developed during these sessions.

This new advocacy initiative, Advocacy in Action, will continue to assist WFH member organizations in developing their advocacy skills. Tailored training sessions offered both regionally and thematically will include the creation of advocacy tools, an individualized coaching program, and a dedicated WFH staff member to support this training. In addition, advocacy project grants will be provided to eligible member organizations that participated in the training workshops. Advocacy in Action is set to begin at the end of 2010.

Last Updated July 2010