ACTION ALERT – World RARE Disease Day at National Institute of Health
Rare Disease Day at NIH (RDD@NIH) On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; [...]
Health and Human Services Secretary Adopts New Recommendation on Newborn Screening
Health and Human Services Secretary Adopts New Recommendation on Newborn Screening Recommended Uniform Screening Panel now to include Critical Congenital Heart Disease WASHINGTON, DC – September 22, 2011 – Health and Human Services Secretary Kathleen Sebelius adopted the recommendation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) that Critical Congenital [...]
RARE DISEASES – Washington Post Supplement sheds light and insights into the world of rare disease
Many Advocates, Industry, Parents, Advocacy Organizations have participated in the first in a series of Rare Disease reports being produced by Media Planet. This first report will be seen by over 4 million readers of the Washington Post, available on newstands around the country today. Make sure and pass this along. It’s an important read [...]
Genetic Diseases In Children (GDC) Conference – A Grand Slam!
The Wadsworth Center, March 7-10, NYC at, was host to the Genetic Diseases In Children Conference. My recommendation . . . make it to the meeting next year! Here’s why! Most conferences discuss theories, postulate and talk a lot about ‘what can and should be done’ about a topic. The GDC Conference created an agenda [...]
A Can't Miss Conference This March – Genetic Diseases In Children – NYC
The Genetic Disease in Children Conference is taking place in New York City this spring – March 8-9, 2011. With over 100 speakers and a robust list of attendees this conference is a must attend event! This national conference will bring attention to the unique health care challenges faced by children living with genetic disease [...]
Patients 2.0, the growing demographic of networked patients
In a ballroom at the Hilton Union Square in San Francisco on October 6, 2010, several hundred people shared ideas, debated, and painted a multi-faceted picture of the NewPatient: the networked patient. The meeting was convened, in “unconference” style, in conjunction between the Health 2.0 Conference and Gilles Frydman, founding father of ACOR, the Association [...]
Patients 2.0 – Health 2.0 – Rare Disease Patients invited!
Join Health 2.0 as they work to plan the next phase of action for patients, citizens and anyone passionate about improving healthcare, working both online and face to face. Wednesday, October 6 from 3-6pm at the San Francisco Hilton in Union Square @ Patients 2.0 Patient-innovators and advocates will present novel ideas and new ways [...]
The Global Genes Fund – To Help Bring New Money, Interest and Champions to the Rare Disease Community
Their exists an inherent need to bring more money into the rare disease community to fund research. Individual rare disease specific organizations work tirelessly to try and raise capital to fund various research projects, with the hope of bringing new therapies, treatments and cures to their communities children. Recently Jonathan Jacoby, CEO RARE Project and [...]
Organ Donors, Thalassemia, and Appropriations
An art sale benefits the New York Organ Donor Network; the Cooley’s Anemia Foundation battles on against a fatal genetic blood disorder; and the Senate supports orphan drug development and the treatment of rare diseases. Also, MarbleRoad is planning a big event for Saturday, October 9, 2010 in Washington, DC – please mark your calendars!