Wall Street Journal Reports – When Patients Using Social Networks To Spur Research

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Using Social Networks To Spur Research for Rare Diseases; Mayo Clinic Signs On When Katherine Leon began feeling crushing chest pain six weeks after the birth of her second child, doctors were perplexed about what was causing her symptoms. Ms. Leon was then 38 years […]

Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness of SMA

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At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does […]

Guest Blog Scientific American – Innovation in Medical Diagnositics Saves Lives

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Innovation in Medical Diagnostics Saves Lives – a system that isn’t broken and doesn’t need fixing For over a century, the U.S. Food and Drug Administration (FDA) has done a laudable job of ensuring the safety and efficacy of healthcare for Americans. Recently announced potential […]

‘R.A.R.E.’ BOARD OF DIRECTORS AND ADVISORS ANNOUNCED

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The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease.  Rare disease affects more children and their families then AIDS and CANCER combined worldwide.  The […]

August is Spinal Muscular Atrophy Awareness Month

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Spinal muscular atrophy (SMA) is the leading genetic cause of death in babies under the age of two.  It affects families of all ethnic predilections, often with no prior history of the disease. Newborns with SMA appear healthy, but over time their lack of muscular […]

EVERYLIFE Foundation Blog – FDA Commissioner Appoints New Leadership

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The Right Person for the Job:  FDA Commissioner Hamburg Appoints New Leadership As we continue to advocate for increased funding and improved specialized review divisions at the FDA, we are encouraged by the recent positive action coming from the Commissioner’s Office.  Commissioner Hamburg has reorganized […]

Hiking Mt. Kilaminjaro to Raise Rare Disease Awareness

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Hikers take on a big challenge to raise awareness and climb for a cause! On July 29th, 2011, 9 trekkers set out to reach Uhuru Peak – the highest point in Africa at 19,341 feet and the top of Mt. Kilimanjaro in Tanzania.  The group […]