Michal Rutkowski, Director, Regional Patient Advocate Program
HAEi Regional Patient Advocates – Continuing to Advance HAE Advocacy!
Time seems to pass in the blink of an eye, and it’s hard to believe that we are at the end of another impactful year of advocacy.
This provides the perfect opportunity to reflect on the past twelve months and the work of HAEi’s Regional Patient Advocates (RPA) and how their support has an incredibly positive impact on HAEi Member Organizations (MO), patients, and their families.
2024 has been quite a year! In the following articles the RPAs will share highlights from the year and their hopes for 2025.
As a Director of the RPA Program, I am delighted to share key achievements, many of which have been shared through our social media platforms, website, and this magazine:
- A total of 101 HAEi Member Countries, with the addition of HAE Nepal and HAE Zimbabwe
- Of the 101 Member Countries, 73 now have access to at least one modern on-demand treatment option, while 54 have access to at least one modern long-term prophylaxis medication. However, availability varies by country and often depends on complex and time-consuming procedures.
- The HAEi RPA Team has grown to 12 members.
- HAEi research, “The State of Management of HAE,” has been completed across 28 countries in Europe (including both EU and non-EU states) and in 15 countries across the Middle East and North Africa.
We have achieved a lot in 2024. Do we have more to do? Absolutely! That is why the RPAs stay focused on one of HAEi’s top priorities: Advancing HAE advocacy and improving the lives of those affected by this debilitating condition.
Stay tuned!
Michal Rutkowski
Director, Regional Patient Advocate Program