Last year the Regional Patient Advocates rolled out a new HAEi initiative called Regional Advisory Groups (RAGs) in each of the regions they represent.
The initiative followed an unanimous vote by the HAEi General Assembly during the 2018 HAE Global Conference in Vienna, Austria where it was resolved to broaden HAEi Governance participation by establishing the RAGs. This initiative is a key component of the decentralized approach to advocacy and support that HAEi has adopted.
The decentralized approach means that HAEi can focus on each country and region’s specific needs more precisely.
The RAGs are made up of patients or family members from each member organization who the member organization nominated as the Advisor for their country. The appointed Advisor from each member organization meets several times a year with their Regional Patient Advocate to discuss each country and region’s challenges and unmet needs. The information and outcomes from these meetings provide the HAEi Leadership with the basis for adjusting existing programs and services or establishing new projects and initiatives to best serve the needs expressed by the Advisors.
“The HAEi’s global footprint has grown substantially through the work of our Regional Patient Advocates. This growth, achieved in a short amount of time highlights the importance and need for useful and meaningful tools and resources to assist our member organizations to best serve their patient community”, says Fiona Wardman, HAEi Chief Regional Patient Advocate.
It is not surprising that there were five unmet needs and challenges consistently identified by all of the RAGs.
HAEi plans to hold the next Regional Advisory Group meeting in the coming months.
Top 5 Challenges
- Lengthy time to diagnosis
- No modern treatment access or home therapy
- Lack of HAE awareness
- Motivating patients and care givers
- Lack of resources