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 Poland are extremely large. First of all, it should be mentioned that in 2013-2015 it was possible to obtain access to and reimbursement for 3 different on-demand treatment options. There are national and regional conferences and workshops dedicated to patients and their relatives, so that they can increase their knowledge about available therapeutic options, treatments, methods of administering drugs and living with the disease. It is also an exchange of experiences between patients and their relatives. We are proud of these meetings. Among other things, thanks to such projects, an increasing number of doctors diagnose patients with HAE. Growing awareness of the disease among doctors, nurses and paramedics leads to an improvement in correctly diagnosed patients.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement of patients with HAE in Poland is the dynamic Patient Organization, thanks to e.g. the activity of which patients have gained access to appropriate treatment options and constantly improve their knowledge about HAE, as well as the ability to self-administer medicines, which makes them independent.
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?
There are many resources, events or activities for people with HAE in Poland that we are proud of! These are national and international conferences and workshops. With the help of HAEi, we have created a new informative website about the disease and the association. Successively, there is also a greater number of employees of the Association, whose aim is to care and help people diagnosed with HAE or those who are looking for their diagnosis. We have created the Regional Patient Ambassador (RAP) to have closer and immediate contact with patients. We provided patients with new tools, such as an electronic patient diary, Brady Club (in cooperation with HAEA) for children – bringing the disease closer and helping to control it.
The event we are most proud of is the cyclically organized National Conference, which brings together the entire HAE community: patients and their relatives, medical specialists, representatives of pharmaceutical companies and health care decision makers;
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We have used following support/resources from HAEi: Emergency Card, Global Perspective Magazine, HAEi Connect, HAE Global Conferences and Regional Workshop, HAEi Hosted Website, HAEi Youngsters, Regional Patient Advocates and Social Media. HAEi helped us to lay the foundations for actions and then develop organization, in order to help patients effectively. HAEi taught us what advocacy is all about and how to professionally implement projects dedicated to patients with HAE and collaborate with other HAE stakeholders.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
By 2030, we would like Polish HAE patients to have unlimited access to all therapeutic options, registered in the European Union, for on-demand treatment and long-term prophylaxis. We want each of the diagnosed patients to be able to administer the drug on their own, regardless of the method of administration, to feel safe, feel independent and take complete control of HAE. We also want all patients with HAE in Poland to be diagnosed by 2030.