In brief

  • Name for organization: HAE Lebanon
  • 14 members at 1 Jan 2021
  • Name of approved HAE treatments: None

Fun or interesting things about Lebanon

  • The beauty of nature across the 4 seasons
  • The good hospitality
  • Delicious Lebanese food

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?

  • We have developed a local community of people with HAE, which helps us feel connected and gives us chance to communicate with other people with HAE. This means we don’t feel so alone
  • We now have a number of Physicians who are aware and knowledgeable about HAE
  • Both of these changes mean people with HAE in Lebanon have trusted sources of accurate information about HAE – which is really important
  • We’re also working to achieve approval for Cinryze or Firazyr from Lebanese Ministry of health – which will be a huge achievement if we can secure this

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?

  • Doctors from Lebanon have been able to attend HAE educational meetings organised by HAEi. This means that more doctors are aware of HAE, they now think of it when they see people with these symptoms and know how to accurately diagnose it.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

  • We’re delighted to have the support of HAEi Regional Contractor – Patient Advocacy, Mr. Rashad Matraji, and HAEi’s Regional Patient Advocate Middle East, Mr. Michal Rutkowski
  • We’re working closely with HAEi, the relevant companies and the Lebanese Ministry of Health to secure access to modern treatments
  • We use the arabic version of the HAEi Emergency Card
  • The HAEi website is a great resource – we use this for the information on HAE and the latest updates on data, research and HAE news from around the world
  • We are looking forward to using the HAE TrackR app when it is available.

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

  • We want to reopen the file with the Ministry of Health to secure the right treatment for people with HAE in Lebanon (this is currently on pause)
  • We want to grow the number of HAE knowledgeable and motivated physicians in Lebanon
  • We want to continue to raise and increase awareness of HAE, to help reduce the time that it takes for people to get an accurate diagnosis of HAE

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