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All parents want to ensure that their child is getting the best care possible. Primary care physicians, or GPs, play an important role but they may not be able to provide all the specific information needed about diseases such as TRAPS, FMF, SJIA, HIDS.

Parents and carers of children with rare diseases have so many medical appointments it can be difficult to keep track and make the most of each appointment. So please explore the resources in this section such as navigating medical appointments or FAQs to learn more.

A minute change in DNA can have big impact

Here’s our current understanding of the science behind the tiny DNA change(s) that lead to rare periodic fevers.

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Periodic Fevers

December 2015 - GLDEIM/ACZ885/0044