Diagnosing Rare Disease infographic from Siren Interactive
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pinterest.com/sireninteract 1. 2. community. Rare Disease Impact Report . 2013. 3. Resources February 4, 2014. 4. February 4, 2014. 5. Children’s Health: Can We Predict Height. Harvard Health 003. Accessed February 6, 2014. 6. - 3/baby-and-brain. Accessed February 4, 2014. 7. Development milestones record – 4 years. MedlinePlus website. Accessed February 7, 2014. 8. J Rare Disord . 2013;1(2):1-15. 9. House M.D. IMDb website. 10. Persch JA. House e ff ect: TV doc has real impact on care. NBC News website. Updated September 9, 2009. - health_care/#.UvFpU7S3hxV. Accessed February 4, 2014. 11. Stanford School of Medicine website. February 4, 2014. 12. November 5, 2013. Accessed February 4, 2014. 13. research. Stanford School of Medicine website. 14. February 4, 2014. Sources: 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 As research eff orts towar d finding new Rare Disease Day , help us also raise awar eness for the need for ph ysician di agnoses of rare diseases. In 7 years, every single cell in your skeleton will be replaced with a new cell. 13 On average, the clinical trial process takes 6-7 years. 14 12 Over half of primary care physicians rate their rare ” 8 In 6 years, you can receive a Master of Science degree from Stanford University . 11 Rec alling an episode of House, a 19-year-old woman once diagnosed herself with Guillain- Barré s yndrome—and was correct. 10 In 5 years, you can watch all 8 seasons of the TV show House M.D. about . 9 physicians about their child’s rare disease. 8 Curiosity peaks at 4 years old—the age when a chi ld typically asks the most 7 By the age of 4 , a child’s vocabulary will have reached over 1,000 words . 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 I n those first 3 years of life, the brain has twice as man y s ynapses as it will in adul thood. 6 8 physicians before receiving a proper diagnosis. 2 At 3 years old, a child’s brain reaches 80% of its adult size. 6 From inf ancy t o age 2, about 14 inches in height are added. 5 receives 2-3 misdiagnoses. 2 By the age of 2 , we have achieved about half of our adult height . 5 inaccurate diagnoses and hinder the uncovering of new disorders. 4 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 Journey into the Unknown: The Search for Rare Diagnosis There are nearly 7,000 rare diseases world. 1 most a ff ect 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. Can you imagine knowing something was terribly wrong but not knowing why? For over 7 years?
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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.
Transcript of Diagnosing Rare Disease infographic from Siren Interactive
pinterest.com/sireninteract
1.
2.
community. Rare Disease Impact Report. 2013.3. Resources
February 4, 2014.4.
February 4, 2014.5. Children’s Health: Can We Predict Height. Harvard Health
003. Accessed February 6, 2014.6.
-3/baby-and-brain. Accessed February 4, 2014.7. Development milestones record – 4 years. MedlinePlus website.
Accessed February 7, 2014.
8.
J Rare Disord. 2013;1(2):1-15.9. House M.D. IMDb website.
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, 2014.11.Stanford School of Medicine website.
February 4, 2014.12.
November 5, 2013. Accessed February 4, 2014.13.research. Stanford School of Medicine website.
14.
February 4, 2014.
Sources:
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
As research efforts toward finding new
Rare Disease Day, help us also raise awareness for the need for physician
diagnoses of rare diseases.
In 7 years, every single cell in your skeleton will be replaced with a new cell.13
On average, the clinical trial process takes 6-7 years.14
12
Over half of primary care physicians rate their rare ” 8
In 6 years, you can receive a Master of Science degree
from Stanford University.11
Recalling an episode of House, a 19-year-old woman once diagnosed herself with
Guillain-Barré syndrome—and was correct.10
In 5 years, you can watch all 8 seasons of the TV show House M.D. about .9
physicians about their child’s rare disease.8
Curiosity peaks at 4 years old—the age when a child typically asks the most
7
By the age of 4, a child’s vocabulary will have reached over 1,000 words.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 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
At 3 years old, a child’s brain reaches 80% of its adult size.6
From infancy to age 2, about 14 inches in height are added.5
receives 2-3 misdiagnoses.2
By the age of 2, we have achieved about half of our adult height.5
inaccurate diagnoses and hinder the uncovering of new disorders.4
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
Journey into the Unknown: The Search for Rare Diagnosis
There are nearly 7,000 rare diseases
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.
Can you imagine knowing something was terribly wrong but not knowing why? For over 7 years?
