From Chief Regional Patient Advocate Fiona Wardman
The 2022 HAEi Global Leadership Workshop in Frankfurt, Germany, was an excellent opportunity to bring together the Member Organization leaders. I was so pleased that many of the countries in my region had a strong presence – Australia, New Zealand, Japan, Pakistan, India, South Korea, Indonesia, and South Africa. Being face-to-face was something we have all missed on a global scale, and there is an extra buzz from everyone to keep progress going.
The leadup to the workshop was busy assisting the representatives with their visas and providing letters. Sadly, some countries and representatives were still affected by the pandemic and could not attend for various reasons. But I’m happy that off the back of the announcement of the HAEi Regional Workshop Asia Pacific to be held in Bangkok, Thailand, in March 2023, more countries like Hong Kong, Bangladesh, and Taiwan will have attendance from patients, caregivers, and doctors.
Following my visit to Singapore in July to meet with doctors, I held a meeting with patients, doctors and pharmaceutical company representatives in Singapore on 12 November 2022. We have a patient group passionate about kick-starting activities and a commitment from the Rare Disorders Society Singapore (RDSS) for local assistance. The HAE Singapore team has put together realistic goals and has highlighted the urgent needs. I will work with them to roll out their plans.
One of my roles as a Regional Patient Advocate is to ensure that pharmaceutical companies are reminded of the need for modern therapies in the various countries within the region. I am happy to report that the commitment is growing. We have already managed to bring either clinical trials or access to treatments for patients improving their quality of life immensely. In some cases, reimbursement is sadly a little way of, but the goal is in sight.
The end of 2022 is not far away now, and with the amount of achievement this year, I look forward to our progress in 2023.
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