News from South Asia, Germany, Austria, Switzerland, and Israel

From Regional Patient Advocate Fanny Schappler

In the last few months, my focus has been on strengthening collaboration with the Member Organizations (MOs) in my region.

In South Asia, all MOs are working hard on getting HAEi resources translated into their local languages to reach and help more people living with HAE in their communities. India and Bangladesh are working on an upgraded website, which will enable their members and potential individuals affected by HAE to find life-saving information, tailored locally. A key activity for Regional Patient Advocates (RPA) is supporting local meetings. I was honored to attend the second in-person meeting for patients & caregivers in India, which took place on 18 May in Calcutta. The meeting room was packed with families and physicians alike, which shows the eagerness to connect and learn more about HAE. My presentation highlighted our HAEi patient resources, which are available on our website in several languages

In Europe, at the end of May, I completed a round of meetings with the MO leaders of the countries I support: Switzerland, Germany, and Austria. These meetings are essential to ensure I understand their operational challenges and how I can best help them. In these three countries, the groups are mature and longstanding organizations. Therefore, the focus is to ensure their sustainability and continuation through established board member roles, digital literacy, and other support as appropriate. Again, in my role as their RPA, I had the privilege to speak at the annual Swiss patients/caregivers meeting held in Zurich on 24 May. My presentation provided an “outside of Switzerland” perspective, sharing the work we do at HAEi in India and other countries with limited resources and healthcare systems. There was also the opportunity to reshare our newest HAEi travel & relocation guide with participants, very timely given that summer was just around the corner.

I’m excited about the continued journey ahead, supporting my region countries the best I can so they become stronger in their advocacy mission: to help as many people living with HAE as possible in their communities.