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September 2016 Newsletter

Posted by on Sep 29, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on September 2016 Newsletter

September 2016 Newsletter

The September 2016 Newsletter is now available online. Follow this link http://nnpdf.org/september-2016-newsletter/

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Important Message from the Board Chair

Posted by on Sep 28, 2016 in Foundation NewsLine | Comments Off on Important Message from the Board Chair

Dear NNPDF Membership, As we shared earlier this month, Nadine Hill is leaving NNPDF for personal reasons, and we are deeply grateful for Nadine’s dedication and accomplishments over the past 15 years to our community as the central office Executive Director. Nadine’s last day is September 30, 2016, so please join us in thanking Nadine for her unwavering dedication and service to the community. She has been an incredible source of support for many families at their most difficult moments in early diagnosis. She has also worked to support the...

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Patrick Chandler Zimmerman (NPC)

Posted by on Sep 26, 2016 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on Patrick Chandler Zimmerman (NPC)

Patrick Chandler Zimmerman (NPC)

Patrick Chandler Zimmerman (NPC) 2/12/2000~ 9/24/2016   Dear NNPDF Families and Friends, It is with deep heartache that we notify our NPD family membership of the passing of Patrick Chandler Zimmerman (February12, 2000 – September 24, 2016), who boldly fought the NPC battle for 16 years. Patrick loved riding horses (especially Yetti), swimming and spending time at the family’s ranch, The Faded Rose. When he developed cabin fever ~ a good chocolate chip cookie and a trip to Cabela’s were top priority!  He continued to do all these...

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Clinical Trial Information

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

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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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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