Thursday, October 20, 2011

Spreading the Word

Two weeks ago I posted this after I sent an email to the Office for Rare Diseases Research in an attempt to get pancreatic agenesis onto their database. Overnight I received this reply from the lovely GARD people in the US:

The Office of Rare Diseases Research (ORDR) forwarded your e-mail regarding pancreatic agenesis to the Genetic and Rare Diseases Information Center (GARD). GARD is operated under the direction of the ORDR and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic and rare diseases. In your e-mail, you requested that we add pancreatic agenesis to our database to help people find information on this condition.

We appreciate your feedback, and we have added this condition to the ORDR list of rare diseases. We also created a Web page for pancreatic agenesis with information and links to resources. If you have any other suggestions or concerns, please contact us again.

It's not the greatest scientific leap forward but hopefully by getting the information out there future parents and clinicians will be able to get answers easier than we did.

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