Journey into the Unknown:
The Search for Rare Diagnosis
There are nearly 7,000 rare diseases

Can you imagine knowing
some...
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Diagnosing Rare Disease infographic from Siren Interactive

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There are nearly 7,000 rare diseases affecting over 300 million people around the world. 80% of rare diseases are genetic, meaning most affect children.

In the US, it can take over 7 years for a rare disease patient to receive a proper diagnosis.

Published in: Health & Medicine
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Transcript of "Diagnosing Rare Disease infographic from Siren Interactive"

  1. 1. Journey into the Unknown: The Search for Rare Diagnosis There are nearly 7,000 rare diseases Can you imagine knowing something was terribly wrong but not knowing why? For over 7 years? world.1 most affect children.1 In the US, it can take over 7 years for a rare receive a proper diagnosis.2 Or worse, a diagnosis may never happen. In 1 year, about 27,000 clinical trials and 150,000 case reports are published.3 “If I read and memorized 2 medical of a year I’d be 400 years behind.” -Dr. Donald Lindberg, Director of the 3 inaccurate diagnoses and hinder the uncovering of new disorders.4 By the age of 2, we have achieved about half of our adult height.5 From infancy to age 2, about 14 inches in height are added.5 receives 2-3 misdiagnoses.2 At 3 years old, a child’s brain reaches 80% of its adult size.6 In those first 3 years of life, the brain has twice as many synapses as it will in adulthood.6 8 physicians before receiving a proper diagnosis.2 By the age of 4, a child’s vocabulary will have reached over 1,000 words.7 Curiosity peaks at 4 years old—the age when a child typically asks the most 7 In a survey, 42% of primary care physicians agreed or were neutral about the statement, “I can’t get involved with the diagnosis of a rare disease, there are just too many of them for me to be aware of.” 8 In 5 years, you can watch all 8 seasons of the TV show .9 House M.D. about Recalling an episode of House, a 19-year-old woman once diagnosed herself with Guillain-Barré syndrome—and was correct.10 physicians about their child’s rare disease.8 In 6 years, you can receive a Master of Science degree from Stanford University.11 12 Over half of primary care physicians rate their rare ”8 In 7 years, every single cell in your skeleton will be replaced with a new cell.13 As research efforts toward finding new Rare Disease Day, help us also raise awareness for the need for physician On average, the clinical trial process takes 6-7 years.14 diagnoses of rare diseases. Resources for Rare Disease Diagnosis: NIH Undiagnosed Diseases Program (UDP) In Need Of Diagnosis, Inc. (INOD) Syndromes Without A Name USA (SWAN USA) U.R. Our Hope SirenSong Blog pinterest.com/sireninteract Sources: 8. 1. 2. 2013;1(2):1-15. community. Rare Disease Impact Report. 2013. 9. House M.D. IMDb website. 3. Resources 10. Persch JA. House effect: TV doc has real impact on care. NBC News website. Updated September 9, 2009. health_care/#.UvFpU7S3hxV. Accessed February 4, 2014. February 4, 2014. 4. 11. Stanford School of Medicine website. February 4, 2014. 5. Children’s Health: Can We Predict Height. Harvard Health February 4, 2014. 12. 003. Accessed February 6, 2014. 6. 3/baby-and-brain. Accessed February 4, 2014. November 5, 2013. Accessed February 4, 2014. - 7. Development milestones record – 4 years. MedlinePlus website. Accessed February 7, 2014. J Rare Disord. 13. research. Stanford School of Medicine website. 14. February 4, 2014.

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