From President Beverley Yamamoto, HAE Japan (HAEJ): HAEJ applied for the 3rd PASE Award from EFPIA (European Federation of Pharmaceutical Industries and Associations) – PASE is Patient Advocacy Support by EFPIA. HAEJ applied for a project on paediatric HAE to do a survey to identify patients and their treatment needs as well as to carry out focus groups with families and [...]
From Sandy Chan, HAE HK: HAE HK was formed in August 2019 by patients in Hong Kong with HAE and incorporated as a limited company in Hong Kong on 7 November 2019. Tax exemption will be applied. HAE HK aims to achieve optimal standards of care and treatment for all people affected by HAE living in Hong Kong so that [...]
From Regional Patient Advocate Fiona Wardman: The first of its kind patient meeting was held in Seoul, South Korea on 9 November 2019 with presentations from Korean doctors and patients, and HAE International. Following the meeting a patient group was formed. The group already has a website up and running at https://haekorea.haei.org/.
The 83rd member of the HAE International family is South Korea. The patient organization HAE Korea has just been established – and we have three HAE knowledgeable physicians and two HAE knowledgeable hospitals on the map. Have a look at https://haei.org/hae-member-countries/south-korea.
4 August 2019, the very first HAE patient meeting – with 44 patients participating –took place in Hong Kong. The meeting led to the founding of HAE Hong Kong and thus the addition of member number 76 to the HAE International family. HAE Hong Kong already has a Facebook group – you can find it at www.facebook.com/haehongkong. More good news [...]
From Chief Regional Patient Advocate Fiona Wardman: A date has been set for the first patient “meet and greet” in Seoul. HAEi has previously met with Korean doctors, the Korean Organization for Rare Diseases (KORD), and industry partners in Seoul. We again look forward to visiting Korea in November to meet with patients and their carers.
From Chief Regional Patient Advocate Fiona Wardman: Now that the date and venue for the first patient meeting in Hong Kong have been finalized, HAE International is very excited to meet with patients, carers, doctors, industry partners and the Hong Kong Alliance of Rare Disease for this special meeting in August.
From Chief Regional Patient Advocate Fiona Wardman: 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 [...]