World Rare Disease Day at the National Institute of Health (Video)


The National Institutes of Health (NIH) will celebrate the sixth annual Rare Disease Day with a two-day-long celebration and recognition of the various rare diseases research activities supported by the Office of Rare Diseases Research – National Center for Advancing Translational Sciences (NCATS), the NIH […]

A Genomics Argument About Why the NIH is Good for Business


A quote from Elaine Mardis, the Washington University in St.Louis DNA sequencing expert, about how cuts to NIH funding are hurting genomics companies like Illumina, Life Technologies, and Pacific Biosciences, even though they represent one of the few U.S. industry’s making something of value. Strong […]

Third Annual Healthcare Summit Discusses Ways to Spread Awareness and Bolster Policy Changes

Nicole Boice, of Global Genes | R.A.R.E. Project, stands beside Dr. David Eckstein, of the National Institutes of Health.

On November 14-17, Women in Government held its Third Annual Healthcare Summit in Washington, D.C. This three-day event covered a wide range of topics, including women’s health, diabetes, Alzheimer’s disease, public health partnerships, chronic disease prevention and management and recent innovations in healthcare. There were […]

The Forever Fix: Gene Therapy and the Boy Who Saved It

Eileen O'Brien, Siren Interactive's Director of Search & Innovation.  Eileen has more than 16 years of digital healthcare marketing experience and is considered an opinion leader on social media

“On a bright September day in 2008, 8-year-old Corey Haas went to the Philadelphia zoo with his parents, and screamed. Four days earlier he had gene therapy to cure his hereditary blindness, and now the sun was hurting his eyes.” Corey’s amazing story is featured […]

Cincinnati Children’s Announces Major Advancement In Treatment of Duchenne Muscular Dystrophy

The University of Cincinnati Department of Pediatrics, is one of the nation’s leading clinical, research and teaching institutions.

Oct. 16, 2012 Contact: Jim Feuer 513-636-4656 Cincinnati Children’s Announces Major Advancement in Treatment of Duchenne Muscular Dystrophy In what may be the biggest breakthrough in muscular dystrophy in years, a patient at Cincinnati Children’s Hospital Medical Center is believed to be the first in […]

RARE Disease Lobby Day – February 28 – Washington, DC

RDLA is hosting an Advocates Luncheon & Conference Call on September 12, 2012.  RSVP is required for attendance.

RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week!  Join us and make sure Congress hears your voice! Lobby […]

75 Days Until World Rare Disease Day 2012!


It’s December 15th and that means only 75 days left until World Rare Disease Day on February 29th, 2012! Other staggering statistics: Estimated 350 million people worldwide affected by rare disease Only 5% of rare diseases have treatments; there are no cures Over 50% of […]