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Your guide to help find answers about your child’s health.

Rare disease is not as rare as you may think. For a child with a rare disease, an accurate and timely diagnosis can be the key to a longer, healthier life.

If you have unanswered questions about your child's health, RareNavigator may be able to help you take the next step by providing customized tools and resources.

Rare diseases are diseases that affect a small number of people compared to the general population. Did You Know:
There are more than 6,000 known rare diseases worldwide1-3
An estimated 300+ million people are living with a rare disease2-4, with 50% typically occurring in children4,7
Today, it takes an average of 5 years to get an accurate rare disease diagnosis5,6,9
Up to 40% of rare disease patients are misdiagnosed more than once5,6
For a child with a rare disease, an accurate and timely diagnosis can be the key to a longer, healthier life
References
  • 1.Boycott KM, et al. Nat Rev Genet 2013;14(10):681–91; 2. Klimova B, et al. Curr Med Chem 2017;24(29):3153–8; 3. Bavisetty S, et al. Rare Dis 2013;1:e23579;
  • 4.Bick D, et al. J Med Genet 2019 Apr 25. pii: jmedgenet-2019-106111. doi: 10.1136/jmedgenet-2019-106111. [Epub ahead of print];
  • 5.Vandeborne L, et al. Orphanet J Rare Dis 2019;14(1):99; 6. Muir. E., et al. The Rare Reality 2016; 7. Kuiper G-A, et al. Orphanet J Rare Dis 2018;13(1):2.
  • 8.Wakap S, et al. European J of Human Genetics 2019; 28, 165–173; 9. Black, N., et al. Diagnostic odyssey for rare diseases: exploration of potential indicators 2015