HAEi Offers New Advocacy Courses, Patient App in 14 Languages

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by Vanda Pinto, PhD |

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HAE International (HAEi) has expanded its free online training platform to include new courses on advocacy, disease-related information, and resources.

“The HAEi Advocacy Academy is the premier online learning platform for the HAE Community,” Fiona Wardman, the non-profit’s chief regional patient advocate, said in a press release. “It is designed to support people living with HAE in their everyday life as well as help HAEi member organizations to sharpen their advocacy skills.”

The organization’s app, HAE TrackR, which allows users to record and track attacks, treatments, and emergency room visits, is now being offered in 14 languages: Arabic, Brazilian Portuguese, Danish, English, German, Macedonian, Norwegian, Polish, Portuguese, Romanian, Serbian, Spanish, Swedish, and Turkish.

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“I am particularly pleased with the fact that HAE TrackR, with its right-to-left language support, is now available to serve our Arabic speaking community,” Henrik Balle Boysen, HAEi’s executive vice president and chief operating officer, said in another press release. “The right-to-left functionality will enable HAE TrackR to be translated into a wide variety of other languages.”

The next version of the app is expected to have an improved reporting function and ability to notify users of their next treatment.

“We are very grateful for the support we have from our global HAE community, and we look forward to continue working with you to improve HAE TrackR,” Boysen said. “If you are interested in helping with the translation of the app to your preferred language, please contact your Regional Patient Advocate.”

HAEi consists of a global network of patients and caregivers who raise awareness about the disease and advocate for approval and reimbursement of treatments for patients. The organization also supplies tools to promote disease education and support research on new therapies.

The organization’s cloud-based training platform is designed to help those interested in becoming better advocates, and now includes a members section that provides training on how to start and build an HAE organization.

“After listening to our member organizations, we have introduced the Member Organization Exclusive Access area that offers skills courses, tutorials, downloadable templates, and case studies concentrating on topics member organizations have asked us to address,” Wardman said. “We will continue responding to the needs of the global HAE community by adding courses to both the exclusive and open-access areas.”

To access the exclusive courses, member organizations need to contact their regional patient advocate and request an access code and sign-in link. Anyone can register to take the open-access courses.

“Effective patient advocacy is at the heart of delivering positive change for people with HAE,” Anthony J. Castaldo, HAEi’s president and CEO, said. “We are excited to see HAEi Advocacy Academy grow and become a practical resource to support our HAE family and especially our member organizations.”