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July 2017 Newsletter

Hello NNPDF Family Members,

We are thrilled to see that so many of you have signed up for the conference!

This is an exciting first step to not only rebuilding the foundation, but rebuilding the community.  By coming together with eager hearts and willing spirits we can make a difference and create a structure that values our diversity while respecting the decisions each family makes along their journey.

To help you with some of those decisions we will have sessions devoted to ASMD and NPC treatment options with presentations from Sanofi Genzyme, CTD Holdings, Orphazyme and Sucampo Pharmaceuticals.  These sessions will focus on what treatments are currently available to help you identify the best option for your family.  We also will be offering smaller sessions where you will have the ability to meet with representatives from each company and have your questions answered directly by them.

As part of our reinvention process, we will be bringing in speakers from organizations that have experience in patient support and advocacy. Our hope is that together we can learn the necessities of a strong patient group while better understanding the role we each can play to becoming a community that works well with industry. This will allow us to use our combined powers to reach our common goal of a cure.

We are also working hard to develop breakouts that are specifically designed to connect you with others. This time provides you with an opportunity to discuss the realities of the disease, the struggles that come with it and the coping strategies to help with daily life.  We will have a session on obtaining government health insurance as well as families sharing practical examples of services that can be obtained plus how to advocate for those specific needs.

This promises to be an opportunity for a new and positive start. We are so excited to be sharing this pivotal moment with all of you.

Look forward to seeing you in Chicago!

Blessings to you and your family,
Lisa Chavez

 

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.

Awareness events promote awareness to the general public about Niemann-Pick Disease.

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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 an account is not required. Click the button to donate now!

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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ASCEND Trial Update
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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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