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ADVOCACY

Posted by on Nov 16, 2018 in Foundation NewsLine, Type C | Comments Off on ADVOCACY

ADVOCACY

Dr. Marc C. Patterson, member of NNPDF’s Advisory Committee recently testified at the U.S. Senate Committee Hearing on Health, Education, Labor, and Pensions. At the hearing entitled Rare Diseases: Expediting Treatments for Patients Dr. Patterson stressed the importance of accelerating the approval of drugs by the FDA to treat rare and ultra-rare diseases. For the complete story and to watch the hearing please follow this link: https://wp.me/P7JHbd-3SQ.   Share...

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Congratulations Dr. Patterson!

Posted by on Aug 16, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on Congratulations Dr. Patterson!

Congratulations to Dr. Marc Patterson on being selected as this year’s recipient of the Persevere Award! The NNPDF is proud to have Dr. Patterson as member of its Scientific Advisory Board and its Reinvention Advisory Committee. Dr. Patterson is a member of the Niemann-Pick medical and research community and a caring partner to patients and families. Watch this video of the Berns family sending their well wishes to Dr. Patterson at the NNPDF Family Conference. Share...

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NNPDF Pinterest Page

Posted by on Aug 14, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on NNPDF Pinterest Page

Did you know that NNPDF now has a Pinterest page? Follow us at pinterest.com/niemannpick for helpful resources on genetic testing, traveling, awareness videos and more. Share...

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Community

Posted by on Jul 3, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on Community

I have been struck by the phrase “community” over the past few weeks.  We use this word to describe the families, adults, children, caregivers, friends, researchers, healthcare providers and others affected by Niemann-Pick disease.  The word itself implies a unique togetherness. It is a group drawn together by the need for a cure, commonalities and shared challenges. I’ve joined this community to help fulfill the vision and mission of NNPDF.  One of the priorities identified and clearly needed is a family services and support program.  To...

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June 2018 Newsletter

Posted by on Jun 21, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on June 2018 Newsletter

June 2018 Newsletter

The NNPDF June 2018 Newsletter is now available. Just follow this link nnpdf.org/june-2018-newsletter/ Share...

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May 2018 Newsletter

Posted by on May 29, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on May 2018 Newsletter

May 2018 Newsletter

The May 2018 NNPDF Newsletter is now available. Just follow this link. nnpdf.org/may-2018-newsletter/ Share...

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CTD Holdings Press Release

Posted by on Apr 30, 2018 in Foundation NewsLine, Type C | Comments Off on CTD Holdings Press Release

PRESS RELEASE FROM CTD HOLDINGS CTD Holdings:  FDA Authorizes CTD to Proceed with Extension Protocol to US Phase I Trappsol® Cyclo™ Trial for Niemann-Pick Disease Type C. CLICK HERE for the complete announcement. Share...

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NNPDF April 2018 Newsletter

Posted by on Apr 19, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on NNPDF April 2018 Newsletter

NNPDF April 2018 Newsletter

The NNPDF April 2018 Newsletter is now available. Follow this link nnpdf.org/april-2018-newsletter/ Share...

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CTD Holdings Press Release

Posted by on Mar 29, 2018 in Foundation NewsLine, Type C | Comments Off on CTD Holdings Press Release

CTD Holdings Press Release

PRESS RELEASE FROM CTD HOLDINGS CTD Holdings Conducts Initial Review of Safety Data for its Phase I and Phase I/II Trials of Trappsol® Cyclo™ to Treat Niemann-Pick Disease Type C. CLICK HERE for the complete announcement. Share...

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March 2018 Newsletter

Posted by on Mar 21, 2018 in Foundation NewsLine, Type A, Type B, Type C | Comments Off on March 2018 Newsletter

March 2018 Newsletter

The March 2018 NNPDF Newsletter is now available. Follow this link nnpdf.org/march-2018-newsletter. Share...

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