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November 2017 Newsletter

 

 

 

 

 

 

DONATE NOW to the Vision of Hope Campaign through PayPal using your debit or credit card. Using PayPal is easy and having an account is not required. Click the button to the right!

Families Helping Families is a support program that was recently developed to offer NPD families a chance to help other NPD families with items that might make their lives a bit easier. These items can be in the form equipment, clothing, diapers, formula, medical supplies, etc. We welcome any ideas, tips or tricks you have found helpful as well.

The NNPDF Equipment Exchange is a part of the Families Helping Families program. 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. The foundation posts descriptions of equipment available and facilitate any equipment requests. Click the special equipment button for updates on equipment availability.

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NEW ITEM AVAILABLE:
Convaid – Rodeo Tilt Pediatric Stroller

Recently available is this Convaid Rodeo Tilt Pediatric Stroller transit model w/all attachments for bus transport, etc. Also includes a tray. Seat width is 14″, weight capacity is 100 lbs. Contact the NNPDF for additional information.

 

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

Please note that patient liaison information has been added to the web page for each pharmaceutical company.

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Sanofi Genzyme Update
on ASCEND Clinical Trial Sites
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Orphazyme
Clinical Trial Update #17

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CTD Announces Approval of Application to
Conduct Phase I/II Clinical Study of
Trappsol(R) Cyclo(TM) in NPC Patients in Israel

CTD Enrolls First Patient in US Phase I Clinical Trial
of Trappsol(R) Cyclo(TM) for Treatment of NPC

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A quick reminder that if you are not receiving our NNPDF monthly newsletter via email or have recently changed your address or email, please click the button below to join us or to update your information.

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For the most current NPD information sign up to receive our blog update notice via email. This is a free service provided to our NPD community and signing up is easy! Just click the button below.

9 8.16

PO Box 49, Fort Atkinson, WI 53538-0049
Phone: 920-563-0930  |  Toll Free: 877-287-3672
nnpdf@nnpdf.org | www.nnpdf.org

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