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A diagnosis can take a while. Cures are elusive. Management can be onerous.
There are over 7,000 rare diseases and each can be complicated and frightening. Having worked for over 20 years with companies trying to find cures for some of these has led to a real appreciation of what the parents go through. Keep up the great work Courtnay; some day there will be therapies, and hopefully cures, for many of these!
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