European Chamber Pharmaceutical Working Group Representative Speaks at 2019 Rare Disease Symposium on Collaboration and Communication

2019-07-06 | Beijing, Shanghai

On 6th July, Ms. Helei Fu, Government Affairs Director of the European Chamber, participated in the Stakeholder Discussion on the 2nd Rare Disease Catalogue at the 2019 Rare Disease Symposium on Collaboration and Communication and presented the stance on rare disease related matters on behalf of the Chamber's Pharmaceutical working group. While the industry recognises the Chinese Government's efforts in providing better drugs and care to the rare disease patients, the working group made the below recommendations:

- Establish a central office responsible for rare diseases in order to improve and strengthen inter-ministerial communication and coordination.

- Clarify the criteria for the inclusion of rare diseases and take industry feedback into account in order to expand the Rare Disease Catalogue. 

- Include more rare disease drugs in the coming National Reimbursement Drug List adjustment, or establish a special national fund to aid rare disease patient treatment in order to improve the affordability of their drugs.

The Symposium was organized by the Rare Disease Alliance, which is supervised by the National Healthcare Commission, and attended by over 600 people. During the close-door Stakeholder Discussion session, about 70 participants from government, medical institutes, patient organisations, pharmaceutical industry and think-tanks attended the meeting.