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Journey Into the Unknown: The Search for Rare Diagnosis

Journey into thẹ Unknown: The Search for Rare Diagnosis Can you imagine knowing something was terribly wrong but not knowing why? For over 7 years? 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.? Or worse, a diagnosis may never happen. In 1 year, about 27,000 clinical trials and 150,000 case reports are published. 1 YEAR "If I read and memorized 2 medical journal articles every night, by the end of a year l'd be 400 years behind." -Dr. Donald Lindberg, Director of the National Library of Medicine Physicians are required to assign a diagnosis code to each patient. Currently, "diagnosis unknown" is not an option, which can lead to inaccurate diagnoses and hinder the uncovering of new disorders. 2 YEARS By the age of 2, we have achieved about half of our adult height. 100% 50% From infancy to age 2, about 14 inches in height are added. A rare disease patient typically receives 2-3 misdiagnoses.? At 3 years old, a child's brain reaches 80% of its adult size. 3 YEARS 80 In those first 3 years of life, the brain has twice as many synapses as it will in adulthood. On average, a rare disease patient visits up to 8 physicians before receiving a proper diagnosis.? By the age of 4, a child's vocabulary will have reached over 1,000 words. 4 ΥEARS dad me want man house yes dog cat apple mom play color Curiosity peaks at 4 years old-the age when a child typically asks the most questions of any other age." 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 House M.D. about 330 times. 5 YEARS M.D. HI 8 Seasons Recalling an episode of House, a 19-year-old woman once diagnosed herself with Guillain-Barré syndrome-and was correct.0 Often times, parents are educating their physicians about their child's rare disease. In 6 years, you can receive a Master of Science degree in Human Genetics and Genetic Counseling from Stanford University." 6 YEARS 11 MASTER Genetic counselors interpret family histories and educate patients and other healthcare professionals about genetic diseases and testing.2 Over half of primary care physicians rate their rare disease training from "neutral" to “very ineffective." 8 In 7 years, every single cell in your skeleton will be replaced with a new cell.B 13 7YEARS New & Improved! As research efforts toward finding new treatments continue to increase, this Rare Disease Day, help us also raise awareness for the need for physician education and quicker, more accurate diagnoses of rare diseases. On average, the clinical trial process takes 6-7 years.4 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 Siren Rare Disease Relationship Marketing interactive Experts Blog: f P 6 Sources: 8. Engel PA, Bagal S, Broback M, Boice N. Physician and patient perceptions regarding physician training in rare disease: the need for strong educational initiatives for physicians. J Rare Disord. 2013;1(2):1-15. 1. RARE facts and statistics. The Global Genes Project website. Accessed February 4, 2014. 2. Shire Human Genetic Therapeutics with External Advisory Board. Rare disease impact report: insights from patients and the medical community. Rare Disease Impact Report. 2013. 9. House M.D. IMDB website. Accessed February 4, 2014. 3. deBronkart D. I'd be 400 years behind-updated bigtime. e-Patient Resources. August 6, 2013. 2013/08/400-years-behind-updated-bigtime.html. Accessed February 4, 2014. 10. Persch JA. House effect: TV doc has real impact on care. NBC News website. Updated September 9, 2009. health_care/#.UV FpU7S3hxV. Accessed February 4, 2014. 4. In Need of Diagnosis, Inc. (INOD) mission and objectives. INOD website. Accessed February 4, 2014. 11. Master's program in human genetics and genetic counseling. Stanford School of Medicine website. 5. Children's Health: Can We Predict Height Harvard Health Publications website. Accessed February 4, 2014.,COL013 003. Accessed February 6, 2014. 12. Genetic counseling. Mayo Clinic website. Updated November 5, 2013. Accessed February 4, 2014. 6. Baby's brain begins now: conception to age 3. The Urban Child Institute website. 3/baby-and-brain. Accessed February 4, 2014. 13. Institute for Stem Cell Biology and Regenerative Medicine research. Stanford School of Medicine website. Accessed February 4, 2014. 7. Development milestonesrecord -4 years. MedlinePlus website. Accessed February 7, 2014. 14. Clinical trials: the phases of drug testing and approval. PHRMA website. Accessed February 4, 2014. Siren Interactive Corporation A O30 This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. ( BY NC ND

Journey Into the Unknown: The Search for Rare Diagnosis

shared by SirenInteractive on Feb 14
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...


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