What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened for people with HAE in Greece is the registration of a national HAE organisation, which will start this year. At the time of writing, we are waiting for the verdict of the court.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for people with HAE in Greece is joining with HAEi and receiving the resources and the right tools to start HAE Greece. We know that we aren’t alone in this battle.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
The resource, event or activity that we are most proud of organising for people with HAE in Greece from 2012 to now is personal efforts to raise awareness by appearing on national TV and giving a speech during a rare disease day event. This year, as HAE Greece, we are planning a big online project to raise awareness of HAE and hopefully find undiagnosed patients.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
The resourses we have used from HAEi is the ability to connect with our RPA and ask for help in getting our organisation officially recognised. We also joined the HAE Regional Workshop in Skopje, which helped us to quickly find solutions to common problems with running an organisation.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
Our next step for HAE Greece is getting our organisation recognised, making more of social media to reach more people, and improve our website. Once the pandemic is over, we plan to hold meetings with doctors and patients. Also, we strive to get additional medicines approved for adults and children with HAE, to find all the patients with HAE in Greece and to create awareness campaigns for medical professionals and the general public.