http://www.crdnetwork.org/blog/pbs-tv-special/ Tue, 27 Jul 2010 23:27:06 +0000 hourly 1 http://wordpress.org/?v=3.0 http://www.crdnetwork.org/blog/pbs-tv-special/comment-page-1/#comment-76 sarahgoshman Tue, 02 Feb 2010 14:16:20 +0000 http://www.crdnetwork.org/blog/?p=1050#comment-76 Nicole, that would be wonderful. I will email you my adsdress. Nicole, that would be wonderful. I will email you my adsdress.

]]> http://www.crdnetwork.org/blog/pbs-tv-special/comment-page-1/#comment-75 nboice Tue, 02 Feb 2010 03:12:21 +0000 http://www.crdnetwork.org/blog/?p=1050#comment-75 Yes, we can provide you with the first dvd made available for part one if you would like!!! Yes, we can provide you with the first dvd made available for part one if you would like!!!

]]> http://www.crdnetwork.org/blog/pbs-tv-special/comment-page-1/#comment-72 sarahgoshman Wed, 27 Jan 2010 15:31:36 +0000 http://www.crdnetwork.org/blog/?p=1050#comment-72 Will this be available on DVD after all three parts have aired? I can't wait to see it... I missed part one this past weekend. Will this be available on DVD after all three parts have aired? I can’t wait to see it… I missed part one this past weekend.

]]> http://www.crdnetwork.org/blog/pbs-tv-special/comment-page-1/#comment-68 ladyesther Wed, 20 Jan 2010 19:01:00 +0000 http://www.crdnetwork.org/blog/?p=1050#comment-68 this sounds very interesting. wish i could attend a conference like this. this sounds very interesting. wish i could attend a conference like this.

]]> http://www.crdnetwork.org/blog/pbs-tv-special/comment-page-1/#comment-64 garydkennedy Tue, 19 Jan 2010 23:21:43 +0000 http://www.crdnetwork.org/blog/?p=1050#comment-64 I attended the Conference on Rare Disease Research Registries as well. Seeing the level of commitment from many researchers and foundations was very comforting. In general the entire conference was spot on. I did hear two comments in the general sessions that were cause of some concern; a presenter from the government (wish I could remember who it was) mentioned that they hope to have standards in place for these registries by 2013; and the director of National Organization of Rare Disorders mentioned that there are 7,000 rare disorders and only 344 approved treatments for all these disorders. The numbers 344 frightened me since I can see that there is so much ground to cover and 2013 for a standard (forgetting the fact that it takes time to build registries after the standard is announced) sounds too far in the future. I attended the Conference on Rare Disease Research Registries as well. Seeing the level of commitment from many researchers and foundations was very comforting. In general the entire conference was spot on. I did hear two comments in the general sessions that were cause of some concern; a presenter from the government (wish I could remember who it was) mentioned that they hope to have standards in place for these registries by 2013; and the director of National Organization of Rare Disorders mentioned that there are 7,000 rare disorders and only 344 approved treatments for all these disorders. The numbers 344 frightened me since I can see that there is so much ground to cover and 2013 for a standard (forgetting the fact that it takes time to build registries after the standard is announced) sounds too far in the future.

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