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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. https://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. https://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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Dillon Papier

Posted by on Apr 11, 2017 in Foundation NewsLine | Comments Off on Dillon Papier

Dillon Papier

It is with great sadness our hearts go out to the family of Dillon Papier. As part of the NNPDF family, please join us in offering our thoughts and support to Dillon’s family.

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Ashtyn Wright

Posted by on Mar 22, 2017 in Foundation NewsLine | Comments Off on Ashtyn Wright

Ashtyn Wright

As part of the NNPDF family, please join us in offering our thoughts and support to the family of Ashtyn Li Wright. May they find peace and love in the memories they...

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March 2017 Newsletter

Posted by on Mar 21, 2017 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on March 2017 Newsletter

March 2017 Newsletter

The NNPDF March e-Newsletter is now available online. Check it out here… NNPDF MARCH...

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Announcement From Vtesse

Posted by on Mar 15, 2017 in Foundation NewsLine, Type C | Comments Off on Announcement From Vtesse

Announcement From Vtesse

Vtesse Completes Enrollment of Phase 2b/3 Pivotal Clinical Trial of VTS-270 in Niemann-Pick Type C1 Disease. CLICK HERE FOR FULL ANNOUNCEMENT

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INPDA Forgotten Youth Video

Posted by on Feb 28, 2017 in Foundation NewsLine | Comments Off on INPDA Forgotten Youth Video

INPDA Forgotten Youth Video

In collaboration with the members of the INPDA and to help bring awareness to Rare Disease Day 2017, the NNPDF is pleased to share this video and information flier. Follow the link below… FORGOTTEN...

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