Dear HAE Community,

As we reflect on the past year, we are thrilled to celebrate the 5th anniversary of HAE HK in August, marking a year filled with remarkable achievements and progress in our mission to support those affected by Hereditary Angioedema.

Our journey over the past year has been nothing short of extraordinary, with significant milestones and events that have brought us closer together as a community. Here are some highlights from the past year:

  1. Full Reimbursement for On-Demand Medications: We are thrilled to announce that Hong Kong now offers full reimbursement for all on-demand medications for HAE, including C1-inhibitor replacement and icatibant. This means that patients can access these medications immediately without financial barriers, empowering them to manage HAE attacks effectively.
  2. Introduction of the Dry Blood Spot Test: At the patient and family day workshop on 8 June 2024 at the Sheraton Hong Kong, patients and their families had the opportunity to try the innovative Dry Blood Spot (DBS) test for HAE diagnosis. This new method promises greater convenience and accessibility in diagnosing HAE, marking a significant step forward in improving family screening and diagnosis.
  3. Community Engagement and Support: Our efforts to identify and support HAE patients in Hong Kong have been ongoing, with over 60 patients identified thus far. We continue to offer free testing and support to those who have not been diagnosed, emphasizing the importance of early detection and treatment.
  4. Oral drug trials: Exciting prospects for the development of oral emergency medicine have ignited hope and anticipation within the community.
  5. Introduction of HAE Patient Passport: We introduced the HAE passport to record attacks tailored for Hong Kong patients.

Looking ahead, we are excited to be working on several new projects, with a particular focus on advocating for free preventative medication for patients in Hong Kong.

We extend our heartfelt gratitude to our sponsors, partners, healthcare professionals, patients, and families for your unwavering dedication and support. Together, we stand united with love and compassion to empower patients and advance progress in enhancing the quality of life for those affected by HAE.