Updates on activities around the world

[IAPG]

Dear All

The global commission for rare Diseases met earlier this months to discuss the diagnostic odyssey for children with rare Diseases. 

Shire, Microsoft and EURORDIS have joined forces to address this urgent challenge by launching the Global Commission to End the Diagnostic Odyssey for Children with a rare Disease. Please see https://www.globalrarediseasecommission.com/ for more info

Next month in Singapore a few members are meeting for the Asia Pacific Organisations for rare Diseases meeting. Prasanna might be attending as he is on the board. Prasanna- request to update the forum on the agenda. I met with Durhanne- The chair of APARDO, RDI and CORD in Tokyo this month and had a discussion with her. I also met with Kevin Huang from China at the same meeting

Please also see the following link https://www.ngocommitteerarediseases.org/contact/. I encourage all of you to join as observers and contribute to the discussions

Many thanks

[IAPG]

Agenda for the Singapore meeting

regards

Ratna