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Tag: global genes

A total of 89 posts are filed under global genes
Creating_Hope_Act-Nancy_Goodman
Creating Hope Act Needs Your Quick Support!
It’s simple and takes less than a minute! The Creating Hope Act was introduced in the House two weeks ago to great success.  We now have… Continue Reading
Wear_That_You_Care_Rare_Disease_Day
World Rare Disease Day Efforts Underway – Wear That You Care
‘Wear That You Care’ is BACK!!  Supporting rare disease worldwide! Last year, thousands of people around the globe joined the campaign… Continue Reading
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… Continue Reading
Electronic_Health_Records_
When Disaster Strikes, Are Your Health Records Electronic, Safe and Immediately Available?
by Dr. Martin H. Orens As a board certified emergency room physician, I am passionate about helping parents see the importance of having an… Continue Reading
Sanfilippo_Foundation_ for_Children
A RARE DISEASE PATIENT PERSPECTIVE – Roy Zeighami
A Rare Disease Patient Perspective I would like to use this blog post to explain why the rare disease community is different, and why it… Continue Reading
REMEDYMD INFORMATICS LOGO
Rare Disease Registry Contest Underway – Deadline for Submissions is Sept 30th
The Sept. 30th CRDN/RemedyMD Video Contest Deadline is Almost Here! This summer, the CRDN announced a video contest to give away one free… Continue Reading
Charcot_Marie_Tooth_Association_Rare_Disease
Charcot-Marie-Tooth Awareness Month Draws Attention to Little Known, But Widespread Disease
Nationwide and Global Events Scheduled Throughout September 2011 to support Charcot-Marie-Tooth disorder A month dedicated to one of the… Continue Reading