WFH staged their first ever Global summit on women and girls with inherited bleeding disorders in November 2020. This was a two-day virtual meeting for women with bleeding disorders, patient organisations, healthcare professionals and other supporters from around the world to exchange information and experiences. The Agenda covered diagnosis and management, how women are advocating for better care, and the ways they are getting their voices heard.
The Summit was also an opportunity to launch WFH’s Women and Girls Initiative. HFA Executive Director, Sharon Caris, interviewed key international leaders about what the Initiative will involve. The Initiative is a response to the need for more education and training, both for health professionals and the community. It will focus on diagnosis and comprehensive care for women and girls, integrating women into the work of national member organisations, and supporting outreach, advocacy and wider community awareness.
One of the speakers in the Summit was Australia’s Susie Couper, who presented on the international VWD (von Willebrand disease) clinical guidelines and how to use them.
Look out for Susie’s report on her presentation, which will appear in the March 2021 issue of National Haemophilia, along with other reports on the Global Summit.
Susie has VWD type 1 and her son has VWD type 3. She was diagnosed as an adult when her son was diagnosed. She is currently on the HFWA Committee and is enthusiastic about the work of her Foundation: ‘I am proud that we at HFWA continually challenge ourselves to work towards a better quality of life for people with a bleeding disorder and to provide support for their families. I have a special interest in inclusion, having seen the many benefits of being involved in our peer activities.’
Susie has been one of the patient representatives on the committee to develop the international VWD clinical guidelines and is now a member of the WFH committee for women with inherited bleeding disorders. She is keen to share her experiences: ‘to be a member of the WFH committee is a deeply felt privilege. I am learning so very much along the way – lets learn together.’
Our thanks to Susie for her commitment to women, VWD, education and peer support both locally and internationally.
Even though the summit is over, you can still register and watch recordings of the Women and Girls Global Summit sessions at https://na.eventscloud.com/VirtualWGBD/
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