Luisa Durante, Program Development Manger, World Federation of Hemophilia (WFH) gathered people with von Willebrand disease (VWD) at the Resource Centre of the WFH 2018 World Congress to promote the Global VWD Call to Action.
The initiative originates from a meeting of 15 patient organizations that took place in early 2017. The attendees identified eight priority areas to help WFH national member organizations (NMOs) place greater focus on VWD. The WFH Board unanimously agreed on the Global VWD Call to Action and its international promotion.
“These priority areas will help local hemophilia organizations expand their remit beyond hemophilia,” said Joanna Halliday, Canada. “Developed countries have a responsibility to champion for developing countries that are not effectively diagnosing or managing these rare bleeding disorders.”
For Nicolas Giraud of France, lack of awareness and education around VWD, together with a difficult diagnosis, have isolated people with rare bleeding disorders. “We have to remember that both women and men are equally affected by VWD,” said Giraud. “The purpose of this Call to Action is to help NMOs be more inclusive so that we become stronger as a bleeding disorder community.”
“Hemophilia is a brand name! VWD and other rare bleeding disorders need the same level of exposure, because no one with a rare bleeding disorder should have to make tough decisions,” stated Baiba Ziemele, President of the Latvia Hemophilia Society.
So far, NMOs from Australia, Canada, France, India, Indonesia, Latvia, Malaysia, Sweden and the U.S.A. have committed to the Global VWD Call to Action. Durante encourages NMOs to sign on, either in person at the Resource Centre or online (available soon), and make a commitment to recognizing and providing support for people with VWD.