Jones & Bartlett Learning Medicine Blog

    February 28th is Rare Disease Day

    Posted by Jennifer Sharp on Feb 20, 2013 5:08:18 PM

    February 28th will mark the sixth annual Rare Disease Day which is meant to raise awareness for rare diseases and improve access to treatment and medical representation for patients and their families. The first observance was on February 29th, 2008, and was chosen because it was a "rare day." In 2009, Rare Disease Day went global with participation from patient advocacy organizations in the United States, China, Australia, Taiwan, and Latin America. More than 60 countries and regions worldwide are now involved in planning awareness-raising activities.

    Rare Disease Facts

    • In the U.S., a rare disease typically affects a patient population estimated at fewer than 200,000
    • There are more than 7,000 rare diseases affecting an estimated 30 million people in the U.S., and more than 300 million globally
    • Almost 1 in 10 Americans is affected by a rare disease
    • Approximately 80% of rare diseases are genetic
    • The National Institutes of Health (NIH) estimates that 50% of the people affected by rare diseases are children
    • While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined
    • Only 15% of  rare diseases have organizations or foundations providing support or driving research
    • An estimated 95% of all rare diseases do not have a single FDA approved drug treatment

    The Global Genes Project

    The Global Genes Project is a non-profit organization led by Team R.A.R.E and R.A.R.E. Project, and aims to raise awareness for people and families touched by rare and genetic diseases. What began as a grassroots movement has now expanded into 500 organizations worldwide.

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    Topics: awareness, Global health, patient education, General Medicine, genetic disease, genetic disorder, global genes project, national human genome research institute, National organization of rare disorders, rare disease day, Global Health Blog, medical, NIH, patient education

    Botswana and Human Resources for Health - Part 2

    Posted by admin on May 14, 2012 10:49:57 AM

    This is the follow-up blog post from Tarascon Publishing Author, Matthew Dasco, MD, MSc.  Click here to read Part 1 of the Botswana and Human Resources for Health post.

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    Topics: Global health, Africa, Fogarty International Center, health workers, Authors, Matthew Dasco MD, Medical Education Partnership Initiative, MEPI, Ministry of Health, National Institute of Health (NIH), University of Botswana School of Medicine, US Health Resources and Services Organization, Botswana, Global Health Blog

    Emergency Medicine in the Developing World

    Posted by Amit Chandra on Dec 12, 2011 10:54:51 AM

    Global Health Blog - December 2011

    I just got back to Botswana after attending the Emergency Medicine in the Developing World conference in beautiful Cape Town, South Africa!  It was exciting to meet so many emergency physicians, residents, paramedics, and nurses from across Africa.  Emergency Medicine (EM) is one of the newest specialties in the world with a 30-year history in the United States, and a 10-year history in South Africa.  EM training programs have recently launched in Ghana, Tanzania, Ethiopia, and in Botswana.  The conference was a good opportunity to compare notes, share experiences, and discuss future collaboration.  We even have our own medical journal now, the African Journal of Emergency Medicine, and my team from Botswana co-authored a paper describing the history of our work:
    Development of Emergency Medicine in Botswana

    Alongside academic EM training programs, we are all working to build acute care, emergency, and pre-hospital services in our respective countries.  The sustainability of these models will depend on the success of our advocacy in demanding these services from the health systems in which we work.  New international campaigns focusing on road traffic injuries (the decade of action for road safety launched this year) and non-communicable diseases will hopefully overlap with and reinforce our efforts...

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    Topics: Global health, Tarascon, Disease, African Journal of Emergency Medicine, Authors, Amid Chandra, Cape Town, diagnostics, Global Health Blog, emergency medicine, Matthew Dacso

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