From Ersan Sevinc, International Communications Manager, HAE Turkey (HAÖDER):

It has been hectic days since the beginning of September. After a long and a beautiful summer, HAE Turkey took off to attend the HAEi SEE Workshop annually held in Skopje, Macedonia. We presented the improvements and our goals for the next year. We are now focused on how we can prevail in the current home treatment approach of the government. What we believe is that home treatment should not be an option, rather it should be accessible for all the patients all around the world.

Another respectable event that HAE Turkey has attended is the national Allergy, and clinical immunology congress held 17-21 November in Antalya, Turkey. Weare proud to be the first patient organization invited for the second time to such a significant congress in our country. The audience of the congress is all the specialists who are meeting many possible HAE patients, and this year 650 attendants were there to expand their knowledge and expertise on a number of diseases. HAe was referred to many times in various sessions by the HAE professors of Turkey. A special course named “Angioedema School” was organized during the congress, and HAE was almost the main subject of the whole event. We truly believe this congress and the efforts of many HAE physicians serve a great purpose since it is always followed by a significant increase in diagnosed patients after such events.

Now we have the Rare Diseases Day, which is another event and chance to gather and raise our voices. next time, we plan to meet with other rare disease associations and organize a joint event. Although we have now some connections with the other rare disease organizations, it is disappointing that Turkey still doesn’t have an umbrella organization or network for the rare diseases associations. We hope to build one and take our place in that organization soon.

HAE Turkey will have its national assembly in February 2019. This assembly will mainly focus on the organization and its future agenda. Patients will also be invited, and a patient-oriented session will be organized to share and discuss the latest HAE news from around the world.