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Jan
28

Readying for a busy Rare Disease month

February I will be at World Symposium 2014 to represent the various rare disease groups I have been working with, but more generally I will be interested in the progress this community has made since the meeting last year. I will be presenting one poster on the ODDT app and how it has grown to include many more MPS diseases such as Gaucher, Batten, Hurler, Fabry etc. I will be posting this poster online also. This conference also will provide a great opportunity to meet many of the scientists we have been working with and also clinicians.

Later in the month, on the 28th its the NIH rare disease day held at their campus. My tentative goal is to try to live blog this meeting and see if I can meet with more rare disease groups. I would be interested to see if we can get more parent/patient advocates using ODDT. I am also interested to see what other scientists will be attending.

More generally I am open to see what collaborations or grant opportunities could come out of these trips and would be interested to hear whether any other new groups had applied to do an RDCRN. I think it will be interesting also to hear how the sequester has impacted NIH rare disease efforts and the general funding climate.

If there are any other rare disease related events please let me know and I will highlight them.

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