June 7, 2019

Initiative Raises Women’s Profile in the US

The Hemophilia Foundation of Michigan (HFM) is working hard to promote awareness about women with haemophilia, according to a feature in Haemophilia News Today (May 29th2019).

The interview with Susan Lerch, HFM Executive Director, followed the success of a new national conference, Being Visible, held in November 2018 and attended by 103 women from throughout the United States. Echoing experience reported elsewhere, Ms Lerch points out that women are being denied diagnosis and treatment and there is  lack of research into the management of haemophilia in women. She also highlights lack of information about women with bleeding disorders in accident and emergency departments, discomfort about what appears to be a new diagnostic label of ‘symptomatic carrier’ and concern over the long term risk of losing men with haemophilia from the surveillance system, after gene therapy has stopped their bleeding disorder without preventing the risk of transmission to their children.

The themes raised in the interview will be familiar to many in Europe and elsewhere. A second conference will be held on November 1st– 3rd, 2019.