Rare Disease Day takes place on the last day of February each year. This year 29 February was Rare Disease Day. The main objective of this special day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The day was launched in Europe in 2008 by EURORDIS, and is now observed in more than 65 nations.

Netherlands
This year, Rare Disease Day in the Netherlands was organized in the ' Dutch Institute for sound and vision ' in Hilversum. Jacob Schipper and Lex van der Heijden were present on behalf of CMTC-OVM. Lex van der Heijden was invited as a speaker. Below you will find his presentation about why patients should be provided with access to their medical records. He gives an example of a CMTC patient who could not be treated because the physician did not have access to the medical records in the weekend.

Files:
Rare Disease Day 2016 the Netherlands HOT
Date 2016-03-30 10:38:21 File Size 674.01 KB Download 566 Download


Other links:

More information about Rare Disease day:
http://www.rarediseaseday.org/article/what-is-rare-disease-day

Take a look at the events worldwide:
http://www.rarediseaseday.org/events/world

Read more:
http://www.rarediseaseday.org/page/news/thank-you-for-another-successful-year