Member Organization spotlight: Regionalizing advocacy to better reach patients and carers

Fanny was the facilitator for an all-female panel, comprising Member Organization (MO) leads from the Netherlands, India, and Poland. The topic for discussion was how RPAs support MOs and how individual countries could replicate this example to meet local and regional representation needs.

Turning first to Ravleen Kaur from HAE India, Fanny asked about the regional representative model in the country and the motivation behind it. Ravleen told the audience that India’s vast scale, as well as the unique needs of different states and regions, such as language, meant that they could not support every patient with a small central team. As a result, they worked to establish on-the-ground contacts who understood the local language and healthcare system, and provided a point of contact for patients whenever required.

Dominika Słodka suggested that the work of HAEi RPAs inspired HAE Poland. Their organization has grown rapidly, and they needed to maintain proximity to their members. In a similar way to the Indian experience, having local people on the ground enabled connection at a more personal level. Asked about practical considerations, Dominika suggested that COVID had led them to more virtual meetings to keep regional advocates informed, and this has now become monthly calls, which work best for them.

In India, in practice, State Representatives become the first point of contact for patients. So as soon as someone new contacts the organization, they speak with that person and are guided by them to doctors, diagnoses, etc. The system in India is still evolving to serve HAE patients, and there is a lack of good clinics. As a result, the representative is there to support and guide them within the health infrastructure.

Shifting towards the role of the HAEi RPA, Marijk Beekman-Kortekaas from HAE Netherlands explained how her relationship with her RPA had changed over time. When Marijk first started, she was new to advocacy. Her RPA at that time, Michal, provided vital introductions to people, which really helped her gain knowledge and confidence. Now, she works in partnership with her RPA, Maria Ferron, sharing ideas and insights. Maria challenges her to progress her thinking, and is there whenever needed. Sometimes this will be daily contact. She suggests this support is especially helpful in the Netherlands, a small country that benefits greatly from the wider European region.

In India, according to Ravleen, her RPA, who incidentally is Fanny, supports by bridging the gap between the MO and pharmaceutical companies. Her experience helps connect Ravleen with other organizations and share what is working for them, which is a great help for a growing organization like hers. Dominika’s perspective on her RPA was that it’s important to know that someone has your back. There’s always someone there to help you.

‘HAEi RPAs - it’s a huge benefit knowing there’s always someone just one phone call away, who’s willing to help you.’

– Marijk Beekman-Kortekaas, HAE Netherlands