HAEi Research

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

HAE related topics that might interest you

Global Perspectives

Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community

HAEi Advocacy Academy

Courses, advocacy training, and tools to support people living with HAE and becoming an HAE advocate

HAEi Connect Member database

Free, secure online membership database and communications platform for HAEi’s member organizations

HAE Companion app

Access to HAEi’s emergency card in many languages and ACARE Centers, HAE knowledgeable hospitals and physicians

Stay tuned – sign up for our newsletter

BE THE FIRST TO KNOW ABOUT HAE NEWS, TREATMENTS, EVENTS AND RELATED TOPICS

HAEi hosted websites

Hosting of your national website or help for you to create a new website – naturally all in your native language

HAE TrackR app

Easy-to-use electronic diary of HAE treatments (preventative and on-demand), HAE attacks, and the impact HAE has on life