I was recently invited to share a snapshot about haemophilia in my family for Hello Haemophilia, a new online network that aims to create positive change in the community.
Please head over to our Facebook page @PulseInSync where the team have shared the link to learn a little about why I have my rare bleeding disorder.
It really mattered to me to get in front of camera and explain how the condition can be inherited to debunk any myths surrounding it. I feel it is as equally essential that authentic stories and experiences are shared by actual people affected by haemophilia, to open a window into each other’s lives and help inform and shape the wider debate around treatment and care.
I am really encouraged to see the number of active, global users following the initiative online already and I am pleased to have made a small, but hopefully meaningful contribution.
If you have any questions or comments, please get in touch via our social media or by email at firstname.lastname@example.org.
(Editor’s note: Hello Haemophilia is initiated by the pharmaceutical company Sobi and by sharing this, it does not imply any endorsement on our part of their products or services.)