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September 2017 Newsletter

Posted by on Sep 19, 2017 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on September 2017 Newsletter

September 2017 Newsletter

The NNPDF September 2017 Newsletter is now available online. Please follow this link. September 2017...

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Posted by on Aug 22, 2017 in Foundation NewsLine | Comments Off on

As part of the NNPDF community please join us in offering our condolences to the family of Rayna Alice Ann Rodriguez.

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NIH News Release

Posted by on Aug 16, 2017 in Foundation NewsLine | Comments Off on NIH News Release

NIH News Release

We have received this notification on the progress of the NIH clinical trial. Please find more details at this link: https://www.nih.gov/news-events/news-releases/experimental-treatment-niemann-pick-disease-type-c1-appears-safe-effective

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Clayton Anderson

Posted by on Aug 5, 2017 in Foundation NewsLine | Comments Off on Clayton Anderson

Clayton Anderson

Please join the NNPDF community in sharing our heartfelt condolences to the family of Clayton Anderson. Our thoughts are with them at this...

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July 2017 Newsletter

Posted by on Jul 19, 2017 in Foundation NewsLine | Comments Off on July 2017 Newsletter

July 2017 Newsletter

The July 2017 NNPDF Newsletter is now available! Just follow this link… http://nnpdf.org/july-2017-newsletter/

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June 2017 Newsletter

Posted by on Jun 22, 2017 in Foundation NewsLine | Comments Off on June 2017 Newsletter

June 2017 Newsletter

The June 2017 Newsletter is now available online. Follow this link. http://nnpdf.org/june-2017-newsletter/

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Dr. Desnick Honored at NORD 2017 Rare Impact Awards

Posted by on May 19, 2017 in Foundation NewsLine | Comments Off on Dr. Desnick Honored at NORD 2017 Rare Impact Awards

Dr. Desnick Honored at NORD 2017 Rare Impact Awards

Please join us in congratulating Dr. Robert Desnick, PhD, MD, as he was honored at the NORD 2017 Rare Impact Awards last night, May 18, 2017 in Washington, D.C.  NORD Rare Impact Awards celebrate those who are boldly leading efforts to make a difference for people living with rare diseases. Dr. Desnick is a highly respected former member of the NNPDF Scientific Advisory Board. For complete article click...

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May 2017 Newsletter

Posted by on May 16, 2017 in Foundation NewsLine | Comments Off on May 2017 Newsletter

May 2017 Newsletter

The NNPDF May 2017 Newsletter is now available online. Just follow this link. http://nnpdf.org/may-2017-newsletter/

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NNPDF Special Announcements

Posted by on May 5, 2017 in Foundation NewsLine | Comments Off on NNPDF Special Announcements

NNPDF Special Announcements

. Community Transition Update . The NNPDF Board and Ad Hoc Transition Committee are delighted to report back on two very productive NPC and ASMD meetings in April.  Our findings indicate that there is enthusiastic support for the role of an unbiased patient support organization and for the reinvention of the National Niemann-Pick Disease Foundation’s vision.  Our goal is to develop a reinvention plan that is realistic and has the needed tools for a more complex operation that provides an array of services focused on family support, education,...

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April 2017 Newsletter

Posted by on Apr 18, 2017 in Foundation NewsLine | Comments Off on April 2017 Newsletter

April 2017 Newsletter

The NNPDF April 2017 eNewsletter is now available. Follow this link… Link text

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