By Fiona Wardman, HAEi Chief Regional Patient Advocate

HAEi Advocacy Academy is the premier online learning platform for the HAE Community that supports people living with HAE in their everyday life and offers training to help our HAEi member organizations sharpen their advocacy skills. 

The content found in the academy is the direct result of needs identified by the HAEi Community.  

The process used to understand and then develop highly relevant learning materials reflects HAEi’s decentralized approach that features our Regional Patient Advocates (RPAs) as the “on the ground forces” to working closely with our member organizations. 

The “bottom up” development process for HAEi Advocacy Academy began with the RPAs asking each member organization to nominate an Advisor who would be part of the Regional Advisory Group (RAGs).  Each RPA then held group or one-on-one meetings with the RAG members and asked a variety of questions to gather information on the challenges and unmet needs being faced in each country and region.

The information generated during the RAGs meetings provided a clear picture of the issues faced by member organizations, which informed development of a “Top 5 Challenges” which served as basis for creating HAEi Advocacy Academy courses.

Besides the academy courses, HAEi has also designed materials to address the issues identified by the “Top 5 Challenges”. 

1. Lengthy time to diagnosis

  • HAEi Emergency Department Poster
  • HAEi Emergency Card
  • HAE Management Plan
  • Learn about ACARE Centers 

2. No modern treatment access or home therapy

  • HAEi Connect, TrackR app
  • Six-part series on Building Your HAE Organization 
  • Patient-Driven Research
  • Working with Pharmaceutical Companies
  • HAE Management Plan

3. Lack of HAE awareness

  • HAEi Hosted Websites
  • HAE Resources for Kids
  • HAEi Youngsters Community
  • HAEi Youngsters Toolkit
  • HAEi Emergency Department Poster
  • Six-part series on Building Your HAE Organization 
  • Patient-Driven Research
  • Learn about ACARE Canters
  • HAE Management Plan
  • Global Perspectives Magazine

4. Motivating patients and caregivers

  • HAE Advocacy Workshop 
  • HAEi Connect
  • Resources for Kids
  • HAEi Youngsters Community
  • HAEi Youngsters Toolkit 
  • HAEi Hosted Websites
  • Six-part series on Building Your HAE Organization 

5. Lack of resources

  • HAE Companion app
  • IT Security
  • Regional Patient Advocates (RPAs)
  • All of the courses already mentioned above

In sum, HAEi Advocacy Academy is a sophisticated, practical, and highly informational tool for member organizations to use to help them build their organizations, assist them in their advocacy efforts, and so much more. HAEi Advocacy Academy isn’t only for member organizations as there are also open courses for anyone wanting to become a better advocate and assist their efforts.

HAEi will add more courses regularly. Check back often to see what’s new. In the meantime, your RPA is always ready to help you with any questions, challenges, or projects.

>> visit academy.haei.org – available in multiple languages!