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Foundation NewsLine


 

Posted by on Sep 16, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on

Clinical Trial Information Just received in the NNPDF Central Office “HHS take steps to provide more information about clinical trials to the public”. You can click here to read the full article.

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Posted by on Sep 16, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on

Mallory Alaine Casey (NPC) 2/28/2012 – 9/10/2016 Dear NNPDF Families and Friends, It is with a heavy heart that we notify our NPD family membership of the passing of Mallory Alaine Casey (February 28, 2012 – September 10, 2016), who courageously fought NPC for 4 years. Mallory loved watching Doc McStuffins, animals (especially ducks) and loved spending time with her family.  She thoroughly enjoyed swimming and riding on the Seedoo with Pa and loved cuddling with her Papa. To Mallory’s loving parents Adam & Kim and her beloved sisters,...

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September 2016 eBLAST

Posted by on Sep 15, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on September 2016 eBLAST

Check out the new information for the upcoming October Awareness Month here… http://nnpdf.org/september-2016-eblast-oam/

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NNPDF Message from the Board of Directors, September 6, 2016

Posted by on Sep 6, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on NNPDF Message from the Board of Directors, September 6, 2016

An important message from the National Niemann-Pick Disease Foundation (NNPDF)   Dear NNPDF Community, After 15 years of service to NNPDF, Nadine Hill has made the difficult decision to resign as Executive Director of the NNPDF.  The effective date is being determined with the Board. Nadine has served the NPD community with unmatched compassion for our families and we greatly appreciate all of her dedication in the fight for a cure. There are many families that will recall Nadine talking with them in their darkest days of diagnosis and...

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Vtesse August 2016 Newsletter

Posted by on Sep 1, 2016 in Foundation NewsLine, Type C, Vtesse | Comments Off on Vtesse August 2016 Newsletter

Vtesse August 2016 Newsletter

VTESSE AUGUST 2016 NEWSLETTER Update on the Clinical Trial of VTS-270: The NPC Study CLICK HERE FOR NEWSLETTER

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Vtesse Webinar September 1, 2016

Posted by on Sep 1, 2016 in Foundation NewsLine | Comments Off on Vtesse Webinar September 1, 2016

Vtesse Webinar September 1, 2016

VTESSE TOWN HALL WEBINAR If you are a parent or caregiver of a person with NPC or a physician who sees NPC patients, please join us for Vtesse, Inc.’s September 1, 2016 Town Hall Webinar. Representatives from Vtesse, along with co-principal investigators Dr. Elizabeth Berry-Kravis of Rush University Medical Center and Dr. Forbes (Denny) Porter of the National Institutes of Health, will: provide information on the latest 18-month data from the Phase 1 trial at NIH, explain what the “blood brain barrier” is and why it is important in the...

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Orphazyme Update 8/26/2016

Posted by on Sep 1, 2016 in Foundation NewsLine, Type C | Comments Off on Orphazyme Update 8/26/2016

Orphazyme Update 8/26/2016

Clinical Update: Orphazyme announces update to its Niemann-Pick Disease Type C Clinical Programme — AIDNPC Dateline: August 26, 2016   Click below for NPC Community Updates from Orphazyme August 26, 2016     July 28, 2016      June 29, 2016    April 28, 2016    March 31, 2016    January 14, 2016    November 25, 2015 09/01/2016...

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August 2016 Newsletter

Posted by on Aug 26, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on August 2016 Newsletter

August 2016 Newsletter

The August 2016 eNewsletter is now available. Follow this link nnpdf.org/august-2016-newsletter/

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2016 NNPDF Upcoming Board Meetings

Posted by on Aug 23, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on 2016 NNPDF Upcoming Board Meetings

2016 NNPDF Upcoming Board Meetings

September 27th  |  7:00 pm October 18th  |  7:00 pm November 15th  |  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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Orphazyme Update 7/29/2016

Posted by on Jul 29, 2016 in Foundation NewsLine, Type C | Comments Off on Orphazyme Update 7/29/2016

Orphazyme Update 7/29/2016

Clinical update: Orphazyme announces update to its Niemann-Pick Disease Type C Clinical Programme — AIDNPC Dateline: July 29, 2016 Click below for NPC Community Updates from Orphazyme July 28, 2016     June 29, 2016          April 28, 2016           March 31, 2016      January 14, 2016          November 25, 2015 07/29/2016...

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