In 2022, the EHC Inhibitor Working Group evaluated the achievements of the inhibitor programme, coming to the conclusion that largely the initial objectives have been met and it was time to set new goals and to capitalise on the achievements of the network. So, it was decided to expand the network built for and with people with inhibitors to work on a better inclusion of people with ultra-rare bleeding disorders. This cohort of our community are still dealing with a lack of information about their condition and also a lack of treatment options, leading to the heavy burden of isolation and loneliness in terms of their inclusion in the bleeding disorder community.

To best serve the needs of all this encompassed in the ERIN, a three-fold route will be taken.

Track 1: Providing information, education and training to people with ultra rare bleeding disorders.

Track 2: Ensuring the transfer of knowledge into the local inhibitor communities.

Track 3: Advocacy, and better treatment and care for all.

We are dedicating January to raising awareness of Glanzmann Thrombasthenia (GT), spotlighting the daily challenges faced by those living with GT and amplifying their hopes for better access to care and treatment.

Glanzmann Thrombasthenia is a platelet function disorder that is caused by an abnormality in the genes for glycoproteins IIb/IIIa. These genes code for a group of linked proteins normally found on the surface of platelets, the glycoprotein IIb/IIIa receptor (also called the fibrinogen receptor). Because this receptor is absent or is not working properly, platelets do not stick to each other at the site of injury, and it is difficult for the normal blood clot to form.

If you are interested in learning more:

Read more about GT on ehc.eu – here

Watch the EAHAD Webinar – here

Listen to our ERIN podcast episode – here 

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