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March 2017 Newsletter

Check out the NNPDF video resources website page for the following informative videos related to Niemann-Pick Disease. These videos are great resources to share with others who are wanting to learn more about the disease.

What is ASMD Niemann Pick Disease?
Produced by the NPUK group, Melissa Wasserstein, MD (Chief, Division of Pediatric Genetic Medicine at Albert Einstein College of Medicine), and Dr. Robin Lachmann (Consultant in Metabolic Medicine at UCLH) define in depth the symptoms, cause, and effect of ASMD Niemann-Pick Disease type A and type B.

Research Into Niemann-Pick Disease Type C
Research plays a HUGE role in finding potential treatments and therapies for those affected by Niemann-Pick Disease. In this video you will hear from Professor Fran Platt (Professor of Biochemistry and Pharmacology at the University of Oxford), who’s studies in the field of Niemann-Pick research have been pivotal to the medical advancements achieved to date.

Forgotten Youth
To bring awareness to Niemann-Pick Disease and in conjunction with Rare Disease Day the INPDA shared this video on the cognitive affects of NPD.


As NPD patient and family needs change, equipment may become available that could be used by another family. The NNPDF assists families who wish to donate this equipment to help others in need. Our goal is to ensure that all NPD families have access to equipment that they need to assist their loved ones affected by Niemann-Pick Disease.

We currently have the following items available. Follow the links for additional information.

        

        

Contributions through fundraising by NNPDF members, families and friends are used to support research toward finding treatments and a cure for NPD. Funds also support the National Niemann-Pick Disease Foundation which provides services to individuals and families affected by Niemann-Pick Disease. Please continue to support the following current and upcoming fundraisers.

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Donating to the NNPDF has just gotten easier. You can now donate online through PayPal using your debit or credit card. Using PayPal is easy and having a account is not required. Click the button to donate now!

Clinical Development for Rare Diseases:
A Primer for Rare Disease Patients and Advocates

The Community Congress of EveryLife Foundation for Rare Diseases will be hosting a webinar on Wednesday, March 29th entitled Clinical Development for Rare Diseases: A Primer for Rare Disease Patients and Advocates. Follow the link below for more information and registration.

INFORMATION AND REGISTRATION

Clinical trials are currently underway studying treatments for Niemann-Pick Disease. For the latest Niemann-Pick Disease research updates, follow the links below.

 

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For the most recent SanofiGenzyme updates
click the above link

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February/March 2017 Newsletters

Vtesse Completes Enrollment of Phase 2b/ Pivotal
Clinical Trial of VTS-270 in Niemann-Pick Type C1

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AIDNPC Clinical Programme
UPDATE #14

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CTD Holdings Initiates Recruitment for
Phase I/II Clinical Study in Europe of
Trappsol® Cyclo for Treatment of
Niemann-Pick Disease Type C

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