This article is part of an extensive feature on the 2024 HAEi Regional Conference Americas, published in Global Perspectives #1 2024
Raising HAE Awareness in the Americas
Javier and Fernanda, two of the RPAs for the Americas region, opened the second day. Together, they told the assembled patients and caregivers about the importance of raising awareness of HAE and shared some effective ways to do so.
Why is raising awareness important?
It increases enthusiasm and support, stimulates action, and generates local knowledge and resources. It can show government policymakers the will for change. It can improve the lives of people within the community.
Where do you start with raising awareness?
The first way described was social media. Although it may seem obvious, it is only powerful when used properly. Javier and Fernanda told the audience, ‘Don’t use it to impress people; use it to impact people.’ Use social media to show who you are and what you stand for. Use it to tell compelling stories, ensuring they are spread far and wide.
The next step is to talk to as many people as possible. Anyone can be an ally in the fight for better care. Share factual information from others, from HAE organizations. Be honest about your life with authentic conversations.
Take the opportunity to make connections with others, especially patients and caregivers in your country and beyond. This can lead to knowledge exchange and greater awareness opportunities. Change happens one person, one moment at a time.
Contact officials such as government officials, meet with your members of Parliament or talk to people at health ministries. Javier and Fernanda shared a key lesson; know what matters to politicians and tailor your message to match their interests. Research interviews and speeches they’ve given. Keep them up to date whenever you have developments or new materials.
Use HAEi’s free website hosting and templates to give your organization a strong online presence. These have been used effectively in the region. Javier and Fernanda shared examples from Canada, Panama and Brazil.
Use and share the HAE Emergency Cards. Use the Emergency Department Posters as an opportunity to raise awareness. These can create life-saving knowledge and awareness when people need it most.
Of course, Javier and Fernanda remarked that attending HAE meetings such as this one in Panama can be powerful in raising awareness, especially as a chance to network with others and share ideas.
Celebrate success; no matter how small, sharing progress keeps your campaign top of mind and demonstrates your impact. And don’t forget to share photos and information on social media to inspire even more people.
Use the media to help you to get your message out there. The two RPAs explained they knew it could be uncomfortable to talk in front of people or a camera, but the benefits could be huge in making the case for change. Telling your story to a newspaper or magazine can reach so many people. Doing radio interviews keeps you away from the camera, and reaches another audience group. HAEi Advocacy Academy has free tools and advice on telling your story to the media, and the RPAs are always on hand to support you. HAEi offers support with the facts and information crucial to getting media interest.
The Youngsters’ Community and HAEi LEAP program offers opportunities to reach critical younger audiences and build the advocates of tomorrow. One youngster from Brazil said, ‘This community makes us feel like we belong to a group that accepts us, loves us, and helps us just the way we are.’ Our young people are also a skilled resource; their ability with social media can be very helpful. Their unique perspective can be very appealing to media and politicians.
hae day :-), 16 May, is a huge opportunity, as an established annual global awareness day. Share your story. Organize a local event. Get involved, however you want. The HAEi provides everything you need at www.haeday.org
Javier and Fernanda concluded by reminding all the delegates of their RPA role. There are 11 RPAs active for HAEi across the world. They have experience. They have courage. They have endurance. They can help you make connections, raise awareness, and make a difference.
