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’s Regional Patient Advocate Middle East Mr. Michal Rutkowski, and Mr. Rashad Matraji
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
Visit one of our HAEi Member Country
Click on the icon in the region of the country you want to know more about
More about hae day :-)
Who is behind hae day :-)
HAE International (HAEi) is a global non-profit network of patient associations dedicated to improving the lives of people with HAE. HAEi works to raise awareness of HAE, improve time to diagnosis, and fiercely advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE. HAEi currently supports 96 member countries around the world.
The annual hae day :-) aims to raise awareness worldwide
hae day :-) unites the HAE community with 16 May as a focus for activities to raise awareness of HAE amongst the general public, healthcare professionals, healthcare decision makers and industry representatives.
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