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This website, built by, is a personal initiative by and the property of Remco de Vrueh. The Website’s graphic design is from Design Delicious Vormgeving. Except for the Rare disease matters logo, trademarks, trade names, logos or service marks mentioned on this site belong to their respective owners. Information on this site is considered as part of the public domain, and may be freely distributed and copied. However, it is requested that in any subsequent use of this work, the author of Rare disease matters be given appropriate acknowledgment.


Although information is gathered and provided with great care, the author of Rare disease matters does not warrant or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information disclosed.

Rare disease matters is a personal initiative. As such Rare disease matters only reflects the personal view and opinion of its author. It does not in any way represent or should be considered as the opinion of organizations the author has worked for in the past or is working for at present.

Some Rare disease matters Web pages may provide links or references to other Internet sites for the convenience of users. The author of Rare disease matters is not responsible for the availability or content of these other sites, and in no event shall be liable to any party for any damages or injury of any kind arising out of or in connection with the use of such other sites.

The author of Rare disease matters does not provide any specific advice (medical, product or otherwise), but only provides information to better understand the dynamics surrounding rare disease research, the translation process towards product development or healthcare innovation, and the important role of patients in the rare disease research and orphan drug development process.


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