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October 2018 Newsletter: Family Services Update

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October 2018
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Family Services Update

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The past three months have been a whirlwind of activity here at the NNPDF in my new role as family services manager. I would like to thank all of those who have taken the time to welcome me and share your NPD experiences with me. As many of you are aware, I was able to jump right into the position by attending the annual family conference in August – this opportunity to be surrounded by all of you was very valuable and helped me move forward in my day-to-day activities. During my time here, I have been able to speak with both newly diagnosed families as well as our veteran families. All your experiences shared with me, allow me to better help all families currently battling NPD and those who are just learning of these devastating diseases. If you have not heard from me, please email me at familyservices@nnpdf.org so we can set up a time to talk. I would love to talk with everyone in our membership.

I’ve had the opportunity to speak with new members as they enroll with the NNPDF, with members updating their contact information, and those who need some guidance. Please know I am here to assist with all phases of the Niemann-Pick journey – if you need anything or have questions, please reach out. 

I had the privilege of attending a caregiver working group hosted by Mallinckrodt in early October. Sitting in the meeting room, listening to the parent caregivers share their life experiences was a very powerful experience. Learning how the NNPDF can continue to better assist our community is a top priority and I value every opportunity to learn directly what is most needed by you – our families. Please make sure your contact information is up to date, so you will be aware of other future market research opportunities within the Niemann-Pick community.

We recently hosted the first in our new webinar series International Niemann-Pick Disease Registry (INPDR) U.S. Launch, a very informative presentation led by Dr. Justin Hopkin, NNPDF Board Chair. The presentation was followed with a question and answer session with the audience. If you missed, it please be sure to check it out today. Let me know if you have any questions about the registry and its importance to the greater NPD community. Stayed tuned for future webinars!

I will also be hosting some small group video chats in the upcoming month – please take a few moments to participate in a brief survey to help us determine topics and best times. This will be a great resource for our community to learn and share with one another. Each group will be limited to a small number of participates to ensure the best possible experience for everyone involved so be sure to sign up early!

Regards,

Laurie J. Turner
familyservices@nnpdf.org

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