People living with ultra rare bleeding disorders are still in an extreme vacuum with lacks of information about their condition and treatment options. They may also carry the heavy burden of isolation and loneliness in terms of their inclusion in the bleeding disorder community. For all these reasons, the EHC decided to work on a better inclusion of people with ultra rare bleeding disorders by creating the European Rare and Inhibitor Network (ERIN).

As part of ERIN’s commitment to be representative we are hosting a series of conversations with patients in the community with extremely rare bleeding disorders

1st Episode

On March 1, 2024 it was Glanzmann’s Thrombasthenia Awareness Day, so we chatted with Quinn Kennedy, a wonderful young man and patient with Glanzmann’s Thrombasthenia to hear about his lived experience, and share some inspiration for those living with this one-in-a-million disorder.

Grab a coffee and listen to Quinn’s inspirational story here!

2nd Episode

For this second episode of the EHC ERIN Podcast, we had the pleasure of chatting with Natalie Lawson, Haemophilia Nurse from the United Kingdom, and Stacey McGeown, a parent from Northern Ireland, to discuss their experience of working and living with a rare bleeding disorder. Our sincere thanks to both Natalie and Stacey for sharing their experience so candidly – we split our conversation in two parts! 

Listen to Natalie & Stacey stories here (Pt 1)

Listen to Natalie & Stacey stories here (Pt 2)