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

From Regional Patient Advocate Fanny Schappler

It has been another active quarter across the countries I support, with continued focus on strengthening patient communities, increasing awareness, and supporting Member Organizations (MOs) in their development.

One of the quarter’s highlights was the official launch of HAE SL, Sri Lanka’s new patient group and the 106th Member Country of HAEi, following the inaugural HAE symposium held in Colombo in January. Fiona Wardman and I represented HAEi at the meeting. Since then, I’ve provided ongoing support, and I am delighted to share that the HAE SL Facebook page and HAEi-hosted website are live. Working with the HAE SL leadership, we’ve completed onboarding to HAEi. Work on translating key resources is progressing well.

In Bangladesh, HAEi has collaborated with the lead physician on our Heat Map survey. We supported the development and testing of the survey, and in March, it closed with more than 110 physician responses. The initiative aims to identify potential pockets of undiagnosed patients and strengthen awareness among healthcare professionals.

In India, we continued supporting patient engagement activities and MO development. Representing HAEi, I presented with HAE India on “Patient Support Groups for HAE” at the HAE Society of India (HAESI) conference in February. Following the successful Bangalore patients’ meeting, which took place alongside the conference, more families are now pursuing registration at Centers of Excellence under the National Policy for Rare Diseases (NPRD), helping improve access to treatment, especially for C1 inhibitor.

Meanwhile, in Central Asia, encouraging groundwork continues in Uzbekistan, where we’ve helped launch a Telegram group for patients and continue working to identify a patient or caregiver leader to officially establish an MO.

Across the region, I’ve continued to support translations of HAEi resources, website upgrades, the onboarding of new MO leaders, and stronger collaboration between neighboring countries. It remains incredibly rewarding to work closely with patients, caregivers, volunteers, and physicians who are all helping move the HAE community forward locally.