HAEI HELPS YOU SECURE DATA TO SUPPORT ADVOCACY FOR MODERN THERAPY AND IMPROVED QUALITY OF LIFE
HAEi conducts targeted, scientific-based research to provide data that our member organizations can use in their advocacy efforts to convince Health Ministries to approve HAE therapies.
HAEi has core methodological approaches for patient-centric HAE studies that we conduct for our member organizations.
HEAT MAP SURVEY
HAEi designed our Heat Map Survey methodology to be used for countries where there are few, if any, people diagnosed with HAE. The objective is to identify “pockets” of potential people with HAE. This helps us to pinpoint areas to concentrate our HAE education and awareness campaigns.
PHARMACOECONOMIC, SOCIOECONOMIC, AND QUALITY OF LIFE ASSESSMENT
Our Pharmacoeconomic, Socioeconomic, and Quality of Life Assessment studies are targeted at countries that already have access to modern HAE therapies. The data collected can be used with Health Ministries to advocate for continued access to modern HAE therapies.
The results of the pharmacoeconomic study conducted in the US were published in March 2021 in the medical journal Allergy and Asthma Proceedings.
>> You can access it for free here
BASELINE BURDEN OF ILLNESS STUDY
The Baseline Burden of Illness study is conducted in countries where an HAE patient organization exists, but no modern HAE therapies are yet available. We use surveys to quantify the number of attacks, emergency room visits, hospitalizations, and patient quality of life. This study provides data that opens the door to approaching health ministries with real-world evidence of a catastrophic unmet medical need.
STATE OF MANAGEMENT OF HAE
Our State of Management of HAE research focuses on the current treatment situation and its impact on people with HAE in several countries in a particular region. Patient leads from HAEi Member Organizations respond on behalf of often small numbers of people with HAE in their countries to provide data on medication availability, Government health priorities, and the challenges faced by and the lived experience of people with HAE. This study spotlights the situation in individual countries and regions as the first step in engaging with health ministries.
>> You can view previous State of Management of HAE surveys conducted by HAEi here