The Asia Pacific region is diverse in terms of how the member organizations are structured. The region has well-established groups and some in their infancy, the others, somewhere in between. Despite the COVID-19 crisis continuing in so many countries, some good work is still being done to continue to create awareness in the region.
HAE India currently has a survey running for patients to answer a set of questions that will give a good understanding of the burden of illness and quality of life in India. There have been many patients taking part who are members of the HAE India patient group, and we hope to have more patients complete the survey who are not currently in the group but are made aware of the study via their doctors.
India now has two ACARE Centers – one in Mumbai and the most recent one in Chandigarh in Northern India.
The outcome of the first round of Regional Advisory Group answers and challenges was shared with the member organizations in each country. Having access to this information will go a long way to understand the region, and we will be working together to overcome these challenges.
Together with HAE Taiwan, a patient brochure was created. The flyer can be handed to HAE patients in hospitals to let them know about the patient group and some necessary information on HAE.
Introductions have been made between HAE Singapore and the Rare Disorders Society Singapore (RDSS). The patient lead is working on her own story to share on the RDSS website and social media platforms to help raise awareness of HAE. The patient leader is now also in contact with the President of the Clinical Immunology Society of Singapore.
HAE Hong Kong has a multilingual emergency card which can be downloaded from their website.
HAE South Korea has a new website at haek.or.kr.
I took part in the CSL Behring webinar on “Suffering in Silence: Assessing Rare Disease Awareness and Management in Asia Pacific”. The link to the webinar was shared in the translated languages to the region’s patient groups.
>> Meet the Regional Patient Advocates