During the past few months, I have been working with member organizations in my region to nominate physicians for the Regional Medical Advisory Panel (RMAP) project. I am pleased with the confirmation from the nominated doctors who have accepted to be panelists. I look forward to holding the first RMAP meeting in the next few weeks.
In late December 2020, I presented ‘International experience on emergency management of larynx edema caused by Hereditary Angioedema’ during a webinar in China to help patients and physicians understand the severity of swelling of the throat and face. The Chinese Organization for Rare Disorders (CORD) and HAE China coordinated the webinar.
I have been assisting HAE Taiwan with the emergency department poster and emergency cards translated with Dr. Shyur and Takeda’s assistance. The patients in Taiwan now have access to icatibant and have had a training session on administration.
Awareness of HAE is low in Singapore, and not many patients have been diagnosed or are not in touch with other patients. The head of the member organization and I have been working on her story to be shared with the Rare Disorders Singapore Society (RDSS) on their website and social media to help locate more patients in this country.
Together with HAE India, we have held two informal Zoom meetups with patients and doctors. These meetups are an excellent way for patients and their family members to learn more about HAE and ask questions in a supportive environment. For the February meet-up, we had a guest – Arouba, a mental health therapist and counsellor. Arouba also has a rare disease and gave practical advice and answered questions from the group. We will continue to hold virtual meetups each month.
Dr. Jindal Ankur from the Post Graduate Institute of Medical Education & Research in Chandigarh, India, has created and registered a Physicians Association to assist with HAE education and awareness in India.
The Ministry of Health and Welfare in South Korea has expanded reimbursement for HAE patients to have two vials of icatibant. Previously patients were only allowed one prefilled syringe at a time for self-administration.
I have been working with HAE Japan on a webinar on HAE with Normal C1. We hope this webinar will answer a lot of questions that patients and physicians may have.
I contributed to a paper on ‘Mitigating Disparity in Health-care Resources Between Countries for Management of Hereditary Angioedema’. This paper has been accepted and will be published soon.
I have been working with the member organizations on submitting their information for the 2021 hae day :-) campaign ‘Let’s Take the Next Step’.
>> Meet the Regional Patient Advocates