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

From Regional Patient Advocate Fanny Schappler

These past few months have been rich in progress for South Asian countries. I’ve been supporting the continued translation of HAEi resources into local languages, and one result is several new Emergency Cards available on haei.org. HAE Bangladesh and HAE India launched new websites in August and September, respectively, including a list of knowledgeable doctors and, most importantly for India, a description of how to get treatment access under the National Plan for Rare Diseases.

A key aspect of the RPA role is supporting Member Organizations (MOs) through facilitation. In this way, I’ve supported HAE India board meetings and in conversations with one of the pharmaceutical manufacturers, with a view to collaborating on shared interests, such as increasing diagnostic rates across the country. In Pakistan, I facilitated their first educational HAE webinar. Featuring Dr Farrukh Sheikh, Dr Muhammad Hussain, Moazzam Farooq (MO Lead), and guest international speaker Prof Philip Li, HAE Pakistan reached around 50 doctors across the country.

Lastly, HAEi is in discussion with a Sri Lankan lead immunologist on an exciting project involving the newly created Institute of Allergology and Immunology in Colombo. We hope the project will come to fruition in January, and I look forward to bringing you more news on this in a future issue of the magazine.

Outside of the 2025 HAEi Regional Conference EMEA, to support the DACH countries I’m responsible for, I’ve taken the lead in translating HAEi’s ‘Women with HAE’ guide into German. We published the guide in German on haei.org in early September.

Thanks to the invaluable support of MO leaders & local doctors, we’re making strides in diagnosing more patients, and getting them & their families the local support they deserve.