Patient Advocacy in HAE: Voices That Matter

In this episode of All Things Angioedema, Dr. Thomas Buttgereit speaks with Patricia Karani, patient advocate from Kenya, about her personal journey with hereditary angioedema (HAE) and her work supporting patients across sub-Saharan Africa. Recorded in the context of the Global Angioedema Leadership Conference (GALC), this episode brings a powerful patient perspective to the discussion. They discuss:🔹 What is it like to live with undiagnosed HAE for decades? 🔹 Why is delayed diagnosis still a major challenge worldwide? 🔹 What barriers do patients face in accessing life-saving treatments? 🔹 How can patient advocacy help improve awareness and healthcare systems? 🔹 Why is collaboration with governments essential for access to therapies? 🔹 How can patients become advocates and drive change in their regions? Patricia shares her story of nearly 30 years without proper diagnosis or treatment, and how this experience shaped her mission to support others. The episode highlights the importance of awareness, building patient networks, and advocating for better access to treatment—especially in regions where rare diseases are often overlooked. Key Learnings from the Episode:HAE diagnosis can be delayed for decades, leading to significant suffering. Misdiagnosis as allergies is common and delays proper treatment. Access to HAE therapies remains a major challenge in many regions. Patient advocacy is essential to raise awareness and improve care. Collaboration with governments is key to making treatments affordable. Building patient networks helps identify and support affected individuals. Education of healthcare professionals is critical for earlier diagnosis. Living with controlled HAE enables patients to live a full life. Personal experiences can be a powerful driver for advocacy. Global collaboration strengthens patient support and healthcare improvements. Chapters:00:00 Introduction to Angioedema and the Podcast01:51 Patient Advocacy and the Global Angioedema Leadership Conference06:40 Patricia's Journey with Hereditary Angioedema10:15 Challenges in Patient Advocacy and Awareness17:03 Motivation Behind Patient Advocacy and Living FullyDo you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠