With the help of the very caring and knowledgeable Dr Shyur in Taipei, HAE International held the first-ever HAE patient meet and greet in Taipei, Taiwan on 19 May 2019. Tony Castaldo and I had the pleasure of meeting patients and carers, listening to their very personal stories and how HAE has affected their lives.
We had the opportunity to share with patients and carers how HAE International can help support the patients with our programs and tools, and how with their collective patient voice we can work towards gaining access to modern treatments.
Dr Shyur is an amazing advocate for patients; he has written many papers on HAE and shared these with media to gain exposure and awareness of HAE throughout Taiwan. Through his tireless work, Dr Shyur has made it so much easier for colleagues to understand HAE, and for patients to find out about their symptoms, and for them to contact him for help.
The patients decided to come together and form HAE Taiwan so the following day Tony, Dr Shyur and I met with pharmaceutical industry partners in Taipei to discuss the need for HAE patients to have access to modern treatments, and how HAE International as a global organization can support the group with our initiatives. HAE International would like to thank Takeda and CSL Behring who both have representatives in Taiwan for meeting with us.
Tony and I then met with Ms Ruth Chen, who is the Executive Director of the Taiwan Foundation for Rare Disorders (TFRD). With 20 years of experience, this umbrella organization for rare disorders has a wonderful support program for individual patient groups, where they help guide them through starting an association and even help with funding sources, and give continued support.
HAE Taiwan and their patients and carers are in great hands with Dr Shyur, industry partners and the Taiwan Foundation for Rare Disorders, and HAE International look forward to continuing our support and working with everyone in Taiwan.
At this stage, the only treatments available for HAE in Taiwan are fresh frozen plasma for acute attacks and Danazol for prophylaxis.