Hemophilia Daily - Thursday, July 12, 2012 - (Page 1)
HEMO PHILIA DAILY
The official newspaper of the WFH 2012 World Congress
www.wfh.org
THURSDAY, JULY 12, 2012 • PARIS
Learn to be your own advocate
I
magine a table with four legs: one leg is the medical community, one is factor supply, one is the patient organization, and one is the government or health authority. Frequently, hemophilia patients need to ensure for themselves that all four legs are sturdy in order to properly support diagnosis and treatment in their communities, said Daniel Andrei of the Romanian Hemophilia Association during a Wednesday afternoon session on patient advocacy. To do this effectively, there are a series of questions patients need to ask, said Carlos Safadi Marquez of the Argentina Hemophilia Foundation. These include: What do we want, who can give it to us, what do they need to hear, who needs to hear, how do we get heard, what do we have in terms of resources, what do we need for our development, where do we start, and how do we ensure that what we’re doing is working? In dealing with the government, there are seven steps needed to create a successful advocacy plan, Mr. Marquez said: detection of relevant topics, selection of priorities, preparation of an agenda, identification of favourable and opposing forces, collecting the right informa-
tion, preparation of tactics, and measurement of success. Working with physicians is akin to a good marriage in which communication is key, he said. To create an effective relationship with industry, Mr. Marquez recommended having transparent rules in order to avoid conflicts of interest. “Don’t think of industry as either enemies or part of your organization,” he said. “Look it as a win-win coalition.” Communication is key in patient advocacy, said Brian O’Mahony of the Irish Haemophilia Society, and skills can be improved through training and roleplaying. Specifically, said Mr. O’Mahony, know how newspapers, TV, and radio operate and how to adjust for different types of interviews. For government meetings, know what officials will say against your case and prepare your argument and statistics in advance. Patient organizations need members with empathy, along with people who have the ability to support individuals and family, prepare detailed policy documents and summaries for politicians, write a press release, and argue a Continued on page 3
As the WFH 2012 World Congress in Paris comes to a close today, the WFH would like to thank its more than 5,400 delegates in attendance for their enthusiasm and interest in advancing Treatment for All. This Congress has been the most highly attended to date.
Research a new frontier for the WFH
A Q&A with the chair of the WFH’s Research Committee, Dr. David Lillicrap
T
here is urgent need for research in hemophilia and other inherited bleeding disorders, which is hindered by small patient population and the need for international collaboration. In an effort to address these challenges, the WFH has launched a new global research program that aims to provide infrastructure support for international clinical investigations into inherited bleeding disorders. In advance of the plenary, which will begin at 10:45 in the Grand Amphitheatre, presenter David Lillicrap, MD, Department of Pathology and Molecular Medicine at Queen’s University in Ontario, Canada, answered
questions about the new WFH research program. Q: Why is the WFH getting involved in research? David Lillicrap, MD: The WFH has a unique opportunity to develop an Continued on page 2
Today at a glance
WFH Awards Ceremony Please join us today at 12:30 in the Salle Maillot to celebrate the presentation of the WFH’s most prestigious awards. 08:45 – 10:15 Genetics of hemostasis (Bordeaux Amphitheatre). 08:45 – 10:15 Management of the elbow joint (room 251). 14:15 – 15:45 Debate of long-acting products versus gene therapy (Grand Amphitheatre). 14:15 – 15:45 Coping strategies (room 251). Delegates are treated to the French can-can at Tuesday night’s cultural event.
http://www.wfh.org
Table of Contents for the Digital Edition of Hemophilia Daily - Thursday, July 12, 2012
Hemophilia Daily - Thursday, July 12, 2012
Hemophilia Daily - Thursday, July 12, 2012 - (Page 1)
Hemophilia Daily - Thursday, July 12, 2012 - (Page 2)
Hemophilia Daily - Thursday, July 12, 2012 - (Page 3)
Hemophilia Daily - Thursday, July 12, 2012 - (Page 4)
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