Earlier this year I had the opportunity to attend the Genetic Diseases of Children Conference in New York City sponsored by the New York State Department of Health. What was new and different about this meeting was the mix of people attending: researchers, academics, PATIENT ADVOCATES, government officials, and drug company representatives were all invited to this conference. Patient organization folks finally had a seat at the table, and the conference was a great platform to foster collaboration between these groups.
Inclusion seems to be the trend. Now NORD (The National Organization of Rare Diseases) and DIA (The Drug Information Association) are sponsoring their first meeting together and once again the focus is on the same kind of collaboration. The meeting is in Washington D.C. from October 11 through 13 and the same group of stakeholders is being brought together. There will even be a special track of sessions for patient organization members. This track will focus on everything from the nuts and bolts of running an organization to the kind of topics that are of special interest to only the rare disease community like off-label use of medications. In addition to the opportunity to hear from stars in the field from Francis Collins, NIH Director, to John Crowley, Chairman and CEO of Amicus Therapeutics and Patient Advocate Parent Extraordinaire played by Harrison Ford in the movie “Extraordinary Measures,” those able to attend will study crucial topics like the drug approval process and how to raise funds from the government. For more information about the conference you can go to the NORD website (rarediseases.org).
If you’re closer to Seoul, Korea, there’s another meeting of interest to consider attending. The World Orphan Drug Congress will meet from September 14-16 and the focus is rare disease drug development. This congress is being sponsored by Asian rare disease patient organizations in addition to pharmaceutical companies. The founder and director of China-Dolls Center for Rare Disorders in China, Yoyo Wang is one of the featured speakers! You can register for the Seoul conference by going to www.terrapinn.com/orphandrugasia.
While we’re on the topic of important conferences, please save the date for the 2012 Congenital Hyperinsulinism International Family Conference March 16-18 in Philadelphia.
