What positive changes have happened for people with HAE, in your country, from 2012 to now? What is the biggest achievement for people with HAE, in your country, from 2012 to now?
- The presence of local community through which HAE patients can communicate with each other and feel at ease and reassured.
- The presence of doctors who are fully aware of HAE, who can accurately diagnose the disease and give patients the correct advice.
- The presence of a permanent trusted & reliable source of information about HAE.
- A growing hope after access to medication which will help HAE patients to pull themselves from the darkness of HAE.
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 Hereditary Angioedema awareness scientific webinar organized by the Egyptian Society of Pediatric Allergy and Immunology and the Pediatric Allergy and Immunology Unit, Ain Shams University.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
- Letter sent by HAEI to Egyptian Minister of Health asking the Egyptian Government to support HAE patients and HAE Egypt. This helps to accelerate the registration process of CINRYZE® in Egypt.
- The dedicated Support HAE Egypt gets from the HAEI regional Patient Advocate – Central and Eastern Europe, Benelux, Middle East (Mr. Michal Rutkowski) and Regional Contractor – Patient Advocacy (Mr. Rashad Matraji).
- Information and the latest research on HAE, which is obtained from the organization’s website.
- Using HAEi’s mobile applications.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
- Ensure that the registration of medication for HAE treatment in Egypt has been completed and that the medication can be accessed by all patients with HAE in Egypt.
- Increase the number of doctors familiar with HAE in Egypt; ensure they know how to accurately diagnose and treat HAE.
- Continue the journey of awareness to reach all parts of Egypt and ensure full knowledge of the disease and how to diagnose, and manage it.