With today’s requirements for data protection it is not easy to reach out to those affected by an inhibitor. Often the NMOs have no means to obtain information as to how many people with inhibitors there are in their country. In these situations, the only way to reach out is to ensure enough visibility for the NMO and the support offered to people with inhibitors and their caregivers and families, so that those affected by an inhibitor would want to contact the NMO and benefit from the support offered.
One of the ways to do so is to engage the Haemophilia Treatment Centres to display or distribute various materials describing support available, and asking anyone with an inhibitor to make themselves known to the NMO. The Haemophilia Treatment Centres can also contribute by promoting the EIN and encouraging patients to engage with their NMO. This is all possible without having to breach data protection.
We have created several materials (EIN advocacy pack) that may help you to share information about European Inhibitor Network and help you reach out to people with inhibitors in your community:
