• All delegates gather for a picture during Patient Advocacy Capability Training in Singapore

    All delegates gather for a picture during Patient Advocacy Capability Training in Singapore

  • Mrs Karina Astari (second from left) and Fahrul Amin Iskandar (right) had an interactive discussion with speakers Patient Advocacy Capability Training, Ms Rikki Jones,  Managing Director GCI Health Asia Pasific (second from right) and her associate.

    Mrs Karina Astari (second from left) and Fahrul Amin Iskandar (right) had an interactive discussion with speakers Patient Advocacy Capability Training, Ms Rikki Jones, Managing Director GCI Health Asia Pasific (second from right) and her associate.

  • All delegates gather for a picture during Patient Advocacy Capability Training in Singapore
  • Mrs Karina Astari (second from left) and Fahrul Amin Iskandar (right) had an interactive discussion with speakers Patient Advocacy Capability Training, Ms Rikki Jones,  Managing Director GCI Health Asia Pasific (second from right) and her associate.

Yayasan MPS dan Penyakit Langka Indonesia Represented Indonesia in Asian Rare Disease Patient Forum

Our foundation, Yayasan MPS dan Penyakit Langka Indonesia (Indonesian MPS and Rare Diseases Foundation) had the opportunity to join the “Patient Advocacy Capability Training” Workshop held in Novotel Singapore on Stevens Hotel. This meeting was attended by representatives of organisations focused on the field  on advocating rare diseases and hailing from 9 (nine) countries across Asia, such as Singapore (as the host country), Taiwan, Vietnam, Hong Kong, India, Malaysia, Thailand, Philippines, and also Indonesia. 
Speakers from professional practitioners, such as Alessandra Durstine, Former Vice President on Global Advocacy for the American Cancer Society, gave interactive lecture to provide knowledge on how to  advocate rare diseases in the modern digital age. Topics discussed in the meeting were Digital Advocacy, Political Mapping Advocacy, the Involvement of Patients in Developing Drugs & Medication, and also other issues which might assists the patient organization move further. This workshop had also became an event to share knowledge and experiences between patient organisation in attendance.  It was also a great opportunity for our rare disease foundation to develop networks with other organisations from various countries across Asia

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