Date, time: Friday, November 27 at 9:00 a.m. EST (14:00 UTC/GMT)
On Friday, November 27 at 9:00 a.m. EST (14:00 UTC/GMT) the World Federation of Hemophilia (WFH) will host a 90-minute webinar on advocacy for national member organizations (NMO) in Europe. The event will help to underline the importance of having access to and sustaining standards of care for people with a bleeding disorder (PWBD)—especially during the COVID-19 pandemic.
The COVID-19 pandemic, has, in many ways, affected the realities and activities of NMOs around the world, posing serious challenges for basic program delivery, and creating new concerns for the bleeding disorders community. People involved with NMOs and Hemophilia Treatment Centres (HTC) have the experience and expertise to play a crucial role in initiating and maintaining advocacy campaigns. They can provide essential and evidence-based information to governments and other key decision-makers to ensure that the needs and challenges of PWBD are addressed, particularly when it comes to legislation, regulations, and other policy decisions.
This webinar will provide an opportunity for NMOs in Europe to learn about the current challenges related to advocating for governments to maintain their commitments of procuring treatment products during the pandemic, expanding and improving access to home treatment, and lobbying for access to novel therapies during the COVID-19 pandemic.
The latest results of the WFH Annual Global Survey will be shared during the webinar in order to highlight recent patient demographic trends, and show the state of access to care and treatment products for the bleeding disorders community in Europe.
The webinar will be moderated by Baiba Ziemele, WFH Board member and the president of the Latvia Hemophilia Society. The panel of speakers will include Donna Coffin (WFH), Ellia Tootoonchian (WFH), and Brian O’Mahony (Ireland). Other NMO leaders will share stories of their ongoing advocacy efforts and how they have adapted to the pandemic.
Participants will also have the opportunity to ask questions during the session and presenters will do their best to answer them all, time permitting.