Make a difference – driving change worldwide – the power of online visibility

The HAEi offers a service to all Member Organizations (MOs) that allows them to have a bespoke website produced in their local language(s) and hosted, completely free of charge. As the conference heard, the vast majority of MOs use this service, and four of these joined Patricia Karani on stage to tell their experiences.

Marjia Nikolic from HAE Montenegro told the audience that she felt very proud of having a website in her local language. It has enabled the organization to centralize its information, so people can find what they need. In addition, it has greatly helped people in Montenegro to learn more about the condition and the organization itself. She felt that their website gives HAE Montenegro greater visibility and that official decision-makers take them more seriously.

Fatoumia Said from HAE Comoros agreed that their online presence has definitely influenced how stakeholders perceive the organization. In addition, the website is a constantly available source of information and reassurance for patients.

Marjia returned to the importance of the website being in her local language, as few of their members speak English. Local language information was especially important for Yousra Seflioui from HAE Morocco, as people in her country speak Arabic, French, Moroccan Arabic, and sometimes a little English. Being able to offer information in all the relevant languages to people in the country is very powerful.

Patricia asked Fatoumia about the impact of having an HAEi-hosted website. Fatoumia said that it represents hope for recognition and that people can know that they are no longer alone in facing the disease.

‘A potential HAE patient who had initially been diagnosed with asthma thanked HAE Comoros for providing HAE information online. Without it, he would not be able to get answers about his condition.’

– Fatoumia Said, HAE Comoros

Patricia thanked all the participants for their time and insights. She reminded the audience that HAEi has a dedicated team of specialists to help them develop a website. You can find more details and contact HAEi here.