What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes have happened for people with HAE in Syria is that we found doctors interested in HAE and we wrote a book about HAE. The book includes more than 25 international articles in addition to some local experience and expertise about use of danazol to help prevent attacks. Fresh frozen plasma is now used in critical cases.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
- The biggest achievement for people with HAE is to stop using treatments that aren’t effective/won’t work for HAE
- We’ve also seen improvements in how people with HAE are taken care of.
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?
We now have social media groups where we can come together as a community.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
The resources we are using from HAEi are the membership database platform HAEi Connect, asking our RPA for help and holding a regional workshop.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
My next step is getting access to modern HAE medications.