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 Turkey started with access to two modern therapies for HAE. Another positive change is establishing the patient association in 2015. This gathered all the patients under one roof in Turkey and provided a single point to access information about HAE.
Through the association, a patient community was formed in our country. Through this community, patients that share the same story came together. As an association, we work sensitively in terms of sharing the correct information and guiding the patients to the right point.
With the association, we developed relationships with physicians and the number of physicians managing HAE increased in various centers in our country.
Both groups came together with the patient-physician meetings and organized events, and shared experiences. In addition, although our patients were already informed about their disease, they were able to find answers to their questions directly from the experts.
As well as the patient-physician meetings, as an organization we have attended the national allergy and immunology congresses. They have provided us with a great opportunity to establish relationships with all the physicians in our country and to introduce ourselves as an association.
Our social media activities, which started as a Facebook group, spread to all other common platforms with the development of our website. In this way, we could reach many new patients, and they were able to receive a fast and free diagnosis with the free diagnosis program we carried out.
We continued to inform patients on a variety of subjects via social media and we got good feedback on this.
We had the chance to take part in international activities, through our cooperation with HAEi. We are able to constantly keep ourselves up to date on both associations and hereditary angioedema.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
One of the biggest successes in Turkey for patients is the access to modern treatments for HAE.
Both C1 esterase inhibitor and icatibant are available to all our patients. C1 inhibitors are only available through hospitals, but icatibant is approved for self-treatment in our country. Since icatibant based medications are produced in Turkey, they are widely available and used. In this way, our patients can continue their daily lives with minimum impact on quality of life.
Another success is creating the patient association. In this way, all patients can meet under one roof and receive support from our association for hereditary angioedema.
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 activity that we are the most proud of in terms of HAE in Turkey was the online patient-physician meeting held on May 16, 2020.
We had to cancel 3 major events we planned due to the COVID-19 outbreak. Then, as the situation worsened, the whole world was shut in their homes. However, seeing an opportunity in this situation, we decided to organize an online event that everyone in our country can attend from their home. As a result, more than 200 people attended our event simultaneously and it was the biggest hereditary angioedema meeting we have ever held.
During the event, our physicians who worked on hereditary angioedema made presentations on various topics and informed our patients about the latest information.
In our interactive activity, our patients had the opportunity to communicate with our physicians and association officials by speaking one-on-one.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We first benefited from HAEi resources, with them hosting our association website.
After starting our association, we needed to exist digitally and have a webpage for those who want to reach us. We quickly launched our free WordPress-based website provided by HAEi and started to appear as an association in internet searches, so we had the opportunity to reach many patients suspected of having hereditary angioedema.
We had the opportunity to learn what is happening in the world of hereditary angioedema and to improve ourselves by participating in regional and international HAE events organized and supported by HAEi. With the relationships and friendships we have established in these events, we have worked on how we can adapt and benefit from everyone’s experiences in our own country. In addition, we have obtained valuable information on developing and constantly improving medications and medication studies within these activities.
We also received support from HAEi through the participation of Natasa Angjeleska, the HAEi representative for the South Eastern Europe region that we belong to, in our patient event in Izmir in 2017. Through this, patients in our country received information about HAE from an international source and met an international representative.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
The first of the goals that we want to achieve in our country by 2030 is to allow the administration of C1 esterase inhibitors by patients and to include home treatments within the scope of reimbursement.
Secondly, we want to develop the concept of advocacy among our patients and to reach more young patients and enable them to take a more active role within our association.
Thirdly, we want to increase advocacy activities in our adult patients, to ensure that they take a more active role in the association and to work together in all the activities we carry out throughout the country.
We are always stronger together.