This input is dated May 2021
In brief
- Name for organization: HAE Venezuela
- 4 members at 1 Jan 2021
- Name of approved HAE treatments:
- Danazol
- Cyklokapron
- Fresh Plasma
Fun/interesting facts
- Something funny always comes out of good or bad things and we always have fun through social networks.
- Beautiful natural places, we have Savannas, beautiful natural gardens like Angel Falls (it appears in the ‘UP’ movie) and spectacular beaches.
- Educated and kind People.
What positive changes have happened for people with HAE, in your country, from 2012 to now?
About three years ago the HAE Venezuela made an alliance with the Venezuelan Society of Asthma Allergy (VSAA) and Immunology. Through the doctors of the prestigious VSAA institution, support is provided at the national level to our Venezuelan patients. They have obtained treatment alternatives that help this very risky disease.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
For the AEHVE Foundation it has been very positive to belong to HAEi, both in terms of knowledge about HAE and support on current treatments available worldwide and the new generation treatments. They have always listened to the challenges in Venezuela and we are sure that they will support us in the immediate future to obtain treatments.
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?
In 2019, we held our National Patient Meeting at the Institute of Immunology of Venezuela and participated in the Immunology Congress, where several patients also attended.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
For technology HAEi hosts the Foundation’s website, we participate in the biannual conference and share the same purpose as people from all around the world; to know more and more about HAE and keep us present as one more member of the group that makes up HAEi. Because of HAEi, we are all “not alone”.
The most valuable tool is having the Emergency card that represents our situation in an emergency.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
From our hearts, we want all patients to have effective treatment, immediately available to them.
To have a psychoprophylactic treatment (a psychological technique).
To hold a Global Conference on our beautiful Margarita Island in Venezuela, a place in the Caribbean anchored in our beautiful country. People would come from all over the world, and all our patients could attend and share experiences with other people in the same health situation.
