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Foundation NewsLine


 

NNPDF Updates and Reminders

Posted by on Nov 30, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on NNPDF Updates and Reminders

NNPDF Updates and Reminders

Updates and Reminders from the NNPDF Central Office Follow the links below for the latest updates and reminders. ASMD RESEARCH REQUEST ORPHAZYME UPDATES SANOFI GENZYME PRO STUDY VTESSE...

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Draven Dakota Brown (ASMD)

Posted by on Nov 29, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on Draven Dakota Brown (ASMD)

Draven Dakota Brown (ASMD)

Draven Dakota Brown (ASMD) 11/21/2006 ~ 11/26/2016   Dear NNPDF Families and Friends, It is with great heartache that we notify our NPD family membership of the passing of Draven Dakota Brown (November 21, 2006 to November 26, 2016), who courageously fought the ASMD battle for 10 years. Draven was an avid wrestling fan, enjoyed going bowling and loved the Dallas Cowboys.  He really enjoyed singing Luke Bryan songs!  To Draven’s loving mother and father, Ginger & Paul, and his brother, Hunter, please know that your NNPDF family is...

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Happy Thanksgiving from all of us at the NNPDF

Posted by on Nov 23, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on Happy Thanksgiving from all of us at the NNPDF

Happy Thanksgiving from all of us at the NNPDF

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Upcoming Board Meetings

Posted by on Nov 16, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on Upcoming Board Meetings

Upcoming Board Meetings

December 6th  |  7:00 pm December 27th  |  7:00 pm The members of the National Niemann-Pick Disease Foundation (NNPDF) Board will meet on the above noted dates via conference call. All family members of the NNPDF are welcome to attend and encouraged to join us as the board discusses Foundation business. Please contact the NNPDF Central Office for more details at 920-563-0930...

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NNPDF November 2016 eNewsletter

Posted by on Nov 15, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on NNPDF November 2016 eNewsletter

NNPDF November 2016 eNewsletter

The NNPDF November 2016 eNewsletter is now available. Follow the link below… NNPDF November 2016 eNewsletter

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Vtesse October 2016 Newsletter

Posted by on Nov 15, 2016 in Foundation NewsLine, Type C | Comments Off on Vtesse October 2016 Newsletter

Vtesse October 2016 Newsletter

Vtesse October Newsletters are Now Available Online CLICK BELOW FOR NEWSLETTERS IN SEVERAL...

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Vtesse Press Release Updated…

Posted by on Nov 10, 2016 in Foundation NewsLine, Type C | Comments Off on Vtesse Press Release Updated…

Vtesse Press Release Updated…

 VTESSE PRESS RELEASE Medicines and Healthcare Products Regulatory Agency (“MHRA”) Designates VTS-270 as a Promising Innovative Medicine Updated with PIM Designation Explanation CLICK HERE FOR FULL PRESS RELEASE CLICK HERE FOR PIM DESIGNATION...

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NNPDF Community Update…

Posted by on Nov 7, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on NNPDF Community Update…

NNPDF Community Update from Lisa Chavez, Board Chair NOVEMBER 7, 2016 Dear NNPDF Community, I hope that this letter finds you all transitioning into the fall well. We continue to transition ourselves here at the NNPDF and I would like to update you on where we are in this process. As of the end of October, the Community Needs Assessment has been finalized and over the coming weeks, we will be distributing the findings, collecting your feedback through a survey, and then sharing with you the aggregated feedback.  Our hope is that this will...

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ANNOUNCEMENT FROM VTESSE

Posted by on Nov 2, 2016 in Type C | Comments Off on ANNOUNCEMENT FROM VTESSE

ANNOUNCEMENT FROM VTESSE

VTESSE Medicines and Healthcare Products Regulatory Agency (“MHRA”) Designates VTS-270 as a Promising Innovative Medicine CLICK HERE FOR FULL RELEASE

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Clinical Update from Orphazyme

Posted by on Nov 1, 2016 in Type C | Comments Off on Clinical Update from Orphazyme

Clinical Update from Orphazyme

AIDNPC CLINICAL PROGRAMME UPDATE: Orphazyme Expands NPC Study to Three Sites in the USA Full Press...

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