An agenda built by you, for you
Fiona returned to the stage to provide context on the agenda and to introduce the Regional Patient Advocates (RPAs) who would deliver much of the program.
Fiona made clear that HAEi shaped the agenda for this conference based on feedback from previous meetings.
‘We read every response, and all that input shapes the program you will experience. We build sessions that reflect your priorities and support the work you do within your organizations.’
– Fiona Wardman, EVP and Chief Advocacy Officer
Reflecting on what she called the ‘voice of our community’, Fiona highlighted some key topics:
- Access to HAE medicines and treatments
- Improving diagnosis
- Patient engagement
- Building a strong organization
- Reaching children and their families
- Mental health
- Patient education
- Research
- Partnership
All of these areas are at the heart of every session, Fiona confirmed, as she invited Michal Rutkowski, HAEi Director, Regional Advocacy Program, to join her on-stage and introduce the RPAs who will lead discussions and learning on the topics above.
Michal asked the audience to give a warm welcome to HAEi’s RPAs:
Javier Santana, Central America and Caribbean; Patricia Karani, Sub Sahara Africa; Maria Ferron, Mediterranean, North Africa, Benelux and British Isles; Fernanda de Oliveira Martins, South America and Mexico; Natasa Angjeleska, South Eastern Europe; Fanny Schappler, Central and South Asia, Germany, Austria, Switzerland, and Israel; and Yong Hao Lim, for East Asia.
Turning first to Javier, Michal asked him about the challenges facing countries in his region in improving access to medication. Javier answered that the resistance from government authorities was the first obstacle, and a lack of cooperation from some doctors who don’t want to work with patient groups. In his session, Javier will discuss this topic with patients and Member Organization leaders to hear their plans and strategies to increase access to modern therapies.
Ways to work with doctors and health systems to improve diagnosis and care were the next priority, and one where Natasa will facilitate a session. She shared some initial thoughts on practical steps to engage with doctors, such as asking your own doctor for assistance. She told the audience that her session will feature some amazing guests sharing their success stories and case studies in partnering with physicians.
A session will focus on building stronger and more sustainable patient organizations. Fernanda felt that using HAEi Connect would help build a strong organization, as it offers security for patient data and helps Member Organizations to manage and communicate with their membership. For Fanny, making HAE TrackR more widely available would support building a better organization by fostering truly meaningful conversations between patients and physicians about HAE management.
Fernanda highlighted that she will lead a session on the practicalities of registering Member Organizations and showcase a pilot program, the HAEi Member Organization Growth and Impact Summit (MOGIS).
Fanny’s focus was on building regional networks within a country, and on how good governance, sustainability, and leadership can help an organization build effective collaboration and partnerships with other individuals and groups.
Maria commented on the importance of patient engagement in reaching more people living with HAE. She acknowledged that this is a global problem and a struggle for many and that she would be speaking with several great panelists to discuss immediate ideas to implement and future ways to think about patient engagement.
Patricia will focus on building a community in under-resourced countries. She felt that using an HAEi-hosted website was one way to address problems of mis- or under-diagnosis, by providing high-quality information.
Yong Hao will take that discussion further with a session on educating patients. He felt the two most important things were reliable and accessible content. In his session, the audience would hear from Member Organizations that have successfully educated patients in partnership with pharmaceutical companies.
Participant feedback raised the importance of mental health and quality of life, which would be the basis of a session led by Natasa. She felt that mental and physical health are intertwined; it is crucial to manage both, and Member Organizations will share their experiences.
