WFH NETWORK

Global NMO Training materials ‒ 2012

Marne-la-Vallée, France
July 5-7, 2012

These materials may be used for educational purposes by not-for-profit hemophilia organizations, not for resale or commercial use. In order to obtain permission to translate any of these presentation materials, please contact the WFH Communications Department at wfh@wfh.org.

Session presentations

WFH update
John E. Bournas, Elizabeth Myles, Dolly Shinhat-Ross, and Mark W. Skinner
This update provided information on the Strategic Plan 2012–2014, the second decade of GAP
(2013–2022), the Cornerstone Initiative, and the 50th anniversary project. (PDF)

Fundraising: Building support for your organization
John E. Bournas and Dolly Shinhat-Ross
Panellists: Megan Adediran, Catriona Gordon, Yudiana Montenegro, and Solange Sakr
This session explored opportunities for resource development in hemophilia organizations as well as different experiences from around the world. (PDF)

Clinical research: Issues and ethics
Magdy El Ekiaby, Mark W. Skinner, Alison Street, Alok Srivastava, and Deon York
This session was dedicated to understanding the types of research, the importance of research for the bleeding disorders community, and the roles and responsibilities of patient organizations. It also reviewed the challenges and limitations of clinical trials for new therapies.

  • Introduction (PDF)
  • WFH Research Program
    Mark W. Skinner (PDF)
  • Clinical metrics and outcomes to achieve optimal care
    Alison Street (PDF)
  • Research in Egypt
    Magdy El Ekiaby (PDF)
  • Research and NMOs
    Deon York (PDF)
  • Challenges and limitations
    Alok Srivastava (PDF)

Assessment of hemophilia societies
Rey Sarmenta and Jennifer Laliberté
Brian O’Mahony and Elizabeth Myles
This session focused on the role and main areas of activities of a hemophilia organization. It helped to identify the main strengths and weaknesses of your NMO and help participants to develop a plan to improve in these areas. (PDF)

Conflict management
Sue Cass
This interactive workshop provided an opportunity for participants to increase their understanding of the dynamics of interpersonal conflict, conflict management styles, options and choices, and some of the essential conditions and steps to effective conflict resolution. Practical tips and strategies for conflict prevention and management in the context in which the participants work will also be explored. (PDF)


Updated August 2012