Funding rare disease therapies in Australia: ensuring equitable access to health care for all Australians – McKell Institute – November 2014

Posted on December 11, 2014. Filed under: Health Economics | Tags: , |

Funding rare disease therapies in Australia: ensuring equitable access to health care for all Australians – McKell Institute – November 2014

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Report on the state of the art of rare disease activities in Europe – 2014 edition (Part 1: Overview of rare disease activities in Europe) – European Commission – 18 July 2014

Posted on July 22, 2014. Filed under: Health Status | Tags: |

Report on the state of the art of rare disease activities in Europe – 2014 edition (Part 1: Overview of rare disease activities in Europe) – European Commission – 18 July 2014

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UK Strategy for Rare Diseases – Department of Health – 22 November 2013

Posted on December 17, 2013. Filed under: Medicine | Tags: |

UK Strategy for Rare Diseases – Department of Health – 22 November 2013

 

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Find Zebra – the search engine for difficult medical cases

Posted on April 17, 2013. Filed under: Health Informatics | Tags: , |

Find Zebra – the search engine for difficult medical cases

“The term “zebra” is a medical slang for a surprising diagnosis. Physicians are taught since medical school to concentrate on the more common diseases: “when you hear a gallop, you should think about a horse, not a zebra”. FindZebra is designed to help in those cases when the equine turns out to be a zebra.

There are close to 7,000 rare diseases recognized by rare disease organizations. We index over 31,000 documents covering rare and genetic diseases from 10 reputable sources. Given the number of rare diseases and rate of publication, we think FindZebra is a good companion for medical professionals.”

About the development of the search engine

“this is the author’s version of a work that was accepted for publication in International Journal of Medical Informatics. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A defnitive version was subsequently published and is available online since 23 February 2013.”

FindZebra: A search engine for rare diseases
Radu Dragusin et al
International Journal of Medical Informatics – 23 February 2013

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Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down – 2020Health – 27 September 2012

Posted on October 5, 2012. Filed under: Health Mgmt Policy Planning | Tags: , |

Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down – 2020Health – 27 September 2012

Rarer diseases are neglected by the NHS with misdiagnosis common

“A new report by influential think-tank 2020Health covers the growing problem of GPs missing or misdiagnosing rarer diseases.

The report ‘Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down’ criticises those professionals whose overwhelming focus is on treating a handful of major illnesses rather than developing systems for diagnosing and treating the increasing number of rarer diseases. As a result, thousands of people suffer for years with misdiagnosis and inadequate treatment.

The findings are the result of a roundtable which brought together health policy-makers, GPs, politicians and senior academics. One in seventeen people will be affected by a rare condition in their lifetime, a number that is projected to mushroom in the coming years.”

… continues on the site

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Rare Diseases and Orphan Products: Accelerating Research and Development – Institute of Medicine – 4 October 2010

Posted on October 5, 2010. Filed under: Health Systems Improvement, Pharmacy, Research | Tags: , |

Rare Diseases and Orphan Products: Accelerating Research and Development – Institute of Medicine – 4 October 2010

Type: Consensus Report

full text online

“Rare diseases collectively affect millions of Americans of all ages. They often are serious and life-altering; many are life-threatening or fatal. But because each rare disease affects a relatively small population, it can be challenging to develop drugs and medical devices to prevent, diagnose, and treat these conditions. We still lack even a basic understanding of the cause or underlying molecular mechanisms of many rare diseases. To help in accelerating rare diseases research and product development, the National Institutes of Health (NIH), with support from the Food and Drug Administration (FDA), asked the IOM to examine the opportunities for and obstacles in developing drugs and medical devices for treating rare diseases.

To guide policymakers, the IOM sets forth the elements of an integrated national strategy to promote rare diseases research and product development. Among other recommendations, the IOM calls for NIH to work with industry, academia, and voluntary organizations to develop a comprehensive system of shared resources for discovery research on rare diseases and to facilitate communication and cooperation for such research. In addition, the IOM calls for the Secretary of the Department of Health and Human Services to establish a national task force on accelerating rare diseases research and product development. Overall, the effort and investment needed to move further toward a collaborative, coordinated, open, and sustained approach to rare diseases will be substantial, but not making the investment will also be costly. The potential benefits justify a renewed commitment to accelerating rare diseases research and product development.”

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