By Operations Manager Nevena Tsutsumanova and Chief Specialist Projects and Research Deborah Corcoran

HAEi has many excellent tools and resources to support our growing number of Member Organizations and people with HAE. We designed HAEi Advocacy Academy with our global community in mind – a free, online, cloud-based virtual training platform – accessible from anywhere in the world. 

“HAEi Advocacy Academy is an extremely useful resource for anyone. Whether you are an experienced advocate or just starting out, the courses are full of valuable information from skilled advocate leaders giving practical instructions, real-life examples, and case studies”, says Fiona Wardman, HAEi Chief Regional Patient Advocate.

Our virtual training platform has recently been expanded to include a range of case studies that showcase stories and experiences from HAEi Member Organizations. These add to the many educational courses on advocacy, disease-related information, and HAEi resources. 

As a global organization, HAEi recognized the need for information and tools to help Member Organizations with every step of the advocacy journey. 

“HAEi has a range of advocacy groups under our umbrella, from one person just beginning a patient group to much larger Member Organizations with lots of experience. HAEi Advocacy Academy courses draw on global knowledge and expertise, and there are courses for everyone”, continues Fiona Wardman: “The most popular courses are ‘Building your Organization Part 1 – Getting Started’ to Part six in the series.” 

“We found the fundraising and working with pharmaceutical companies very useful, as it is something we are struggling to do right now. Being able to do this more effectively will help us run our Member Organization.”

HAE Greece

“HAEi set us up on HAEi Connect so we could better manage our member information. We had a lot of questions. HAEi Enterprise Technology Manager Ole Frolich directed us to the course in HAEi Advocacy Academy, and it answered all of them. The screen grabs were very helpful.”

HAE Egypt

HAEi Advocacy Academy allows you to access the courses in your own time. The progress bar shows you how much of a course you have completed, and you can leave the website and come back to finish the course another time – there is no expiry date. All modules are written in manageable ‘bite-size chunks’ that will allow you to start and finish a course in a timely manner. 

We are very proud of HAEi Advocacy Academy and what it provides Member Organizations with. We would like to thank the Regional Advisory Groups (RAGs) for their on-the-ground insights, which are the inspiration behind all the courses. The courses bring to life the unmet needs and challenges highlighted by the RAGs from the first and second round of meetings with their Regional Patient Advocates (RPAs). 

“HAEi Advocacy Academy is an excellent reminder of best practices and gives ideas on situations that may arise”, says Fiona Wardman.

Since the launch of the Member Organization’s Exclusive Access Courses, we have seen a growing number of people using HAEi Advocacy Academy and finding the courses very helpful:

  • 35 of our member countries are using HAEi Advocacy Academy
  • The most popular courses are ‘Building your Organization (Part 1) – Getting Started’, ‘HAEi Resources Summary for MOs’, and ‘HAE Management Plan’.

Courses are being released regularly, so make sure to check the HAEi Advocacy Academy website. If you are in doubt about how to register or, as a Member Organization, where to get your access code – contact your Regional Patient Advocate, and they will help you get started. 

Advocacy Academy can help everyone be a better advocate!

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