Update from HAEi’s Executive Vice President Global Advocacy and Chief Diversity Officer, Fiona Wardman

Advocacy is an essential tool to drive change. In my new role as Executive Vice President of Global Advocacy and Chief Diversity Officer for HAEi, I aim to make a positive impact on the current HAE situation by shaping the organization’s global influence, advancing its advocacy agenda on a worldwide scale with strategic leadership, and managing international advocacy efforts and initiatives.

For those of you at the recent 2023 HAEi Regional Conference EMEA, you will have heard more about our strategy to think global and act local. My role will be to bring that to life for all of our stakeholders. There is a lot of work to do, and I am excited by the opportunity to increase awareness and access to modern therapies for people living with HAE.

What is the key to improving people’s lives with HAE so they don’t need to suffer for most of their lives? The solutions are:

  • Targeted local and global awareness programs, education, awareness
  • Locating patients in all countries around the globe
  • Securing access to and reimbursement for modern therapies is the key to a better quality of life for everyone living with HAE.

In order to make those a reality, every day, I will work to improve the lives of people with HAE by:

  • Ensuring that HAEi’s advocacy strategy and global objectives align with the organization’s mission and goals
  • Key to this will be listening to the needs of Member Organizations, people with HAE, caregivers, and physicians/scientists
  • Planning, developing, and implementing advocacy campaigns, guiding HAEi’s external communications
  • Working with the Director, Regional Patient Advocate Program, and the Regional Patient Advocates, the backbone of HAEi, to pinpoint gaps and unmet needs
  • Implementing solutions to impact each country by increasing awareness of HAE to the broader community with the goal of patients having access to reimbursed modern treatment options. Partnerships and facilitating conversations with rare disease groups, pharmaceutical companies, physicians, and health ministries are key.
  • Monitoring the impact of our RPA team globally with internal and external stakeholders, international developments, and identifying opportunities to influence policy and regulation change.
  • Providing leadership, guidance, support, and accountability to integrate diversity and inclusion within HAEi, to ensure those from diverse backgrounds can thrive and contribute to HAEi’s success

I know that I cannot achieve all of that alone. I’m excited to work with Jørn Schultz Boysen, HAEi’s Executive Vice President Global Operations and Chief Compliance Officer, on new tools and resources and implement them to assist our HAE community and Member Organizations in their advocacy efforts. I’ll be supported by teams responsible for executing HAEi’s efforts worldwide. And most of all, I need you.

I look forward to working with all our HAE friends and partners around the globe to put plans in place.

I can’t wait to get started!