Raising Awareness and Advocating for Change

HAEi’s Fiona Wardman offered a simple message to attendees: “Advocacy is for each and every one of us.” Every patient and every caregiver has a job, she said, in helping raise awareness and advocating for the change we need to improve diagnosis and access to medication.

“As a patient, nobody can tell your story better than you.”

People listen every time we talk, Fiona told the audience. It is important, then, that we all raise our voices and not rely on 1 person in a country or a region. Giving an example, Fiona showed that a single social media post can lead to thousands of views, raise awareness, and lead to better recognition and appreciation of the needs of people with HAE.

Although it is important to partner with other rare disease organizations, HAE competes with 7-8,000 other diseases for interest and a share of the spotlight. Only by raising our collective voices can we get our needs across, she said.

If all this sounds complicated, Fiona suggested that by looking at what had gone before and the support available, it is easy to get started. “Look at your neighboring countries and see what they’re doing,” she advised. It may be necessary to adapt an activity or message to suit your country, but it will be simpler than starting from scratch.

Fiona also highlighted the widespread support and tools available through HAEi. The Regional Patient Advocates and Advocacy Leads are there to support anyone in the APAC region looking to get started with advocacy, she reassured. Additionally, tools like HAE TrackR will help you get on top of your HAE, and help build up a body of evidence about treatment and quality of life.

Everyone can take the first step. Fiona said it was simple to start a conversation. Speak to your neighbors. Reach out to others who have been down the path already. Ask pharmaceutical companies for their support. Put your case to doctors, policymakers, and government officials.

Finally, Fiona reiterated that by working together, we can create a future. Advocacy doesn’t mean, she suggested, doing something you can’t do. If we all do what we can, such as sharing a story, writing a social media post, getting involved with our Member Organization, or just supporting others, then that future comes closer.

“Advocacy isn’t a role; it’s a responsibility that we all share.”