‘THE HILL’ Reports: Help children with rare diseases get the new medicines they need

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Having a seriously ill child is always difficult and painful. It’s even more so when a child’s illness is one of the 7,000 rare diseases for which cures and treatments are hard to find. Rare diseases affect more than 15 million children in the United […]

Nature.com Reports – Rare Disease Studies Seek Online Giving

The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes accelerated aging. Those wanting to raise awareness about a rare disease will be able to take advantage of an initiative being launched later this year: a website that […]

RARE DISEASE TECHNOLOGY TRENDS – 'REGISTRIES', JOIN US JUNE 22

Advancements in Technology Help Rare Disease Research Researchers for rare diseases all need somewhere to digitally store their research data, and manage it effectively, and run actual queries, experiments and studies to make breakthroughs. This type of software tools is typically called a “registry”. The […]

National Nurses Week – Thank those that work to help our kids!

Every year from May 6th – 12th the American Nurses Association celebrates National Nurses Week, and the 2011 theme is “Nurses Trusted to Care.” My favorite quote honoring nurses is, “You heal sometimes. You relieve often. You comfort always.” Camus. A special thanks goes out […]

CBI ANNOUNCES PARTNERSHIP WITH CHILDREN’S RARE DISEASE NETWORK AND THE GLOBAL JEANS PROJECT

BOSTON, MA – The Center for Business Intelligence (CBI), a division of Advanstar Communications, is pleased to announce a partnership with the Children’s Rare Disease Network and The Global Jeans Project for the 6th Annual Rare Disease Leadership Summit coming up July 12 – 13, […]

DNA Day – “Wear That You Care”

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About National DNA Day National DNA Day commemorates the successful completion of the Human Genome Project in 2003 and the discovery of DNA’s double helix by James Watson and Francis Crick in 1953. This annual celebration offers students, teachers and the public many exciting opportunities […]

Wear That You Care Campaign Success at World Rare Disease Day 2011

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It’s a Wrap – Rare Disease Day 2011. DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased […]