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September 2018 Newsletter: Family Services Update

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September 2018
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Family Services Update

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As the National Niemann-Pick Disease Foundation continues to develop your family services program, we once again reached out to learn from each of you in our community what is most important. In August 2018 we met with a group of families at the annual Family Conference. This conference breakout session was the continuation of the “Family Vision Breakout Summary” held at the 2017 conference. In order to continue building a successful family services program, we look to you to identify the top priorities of the community. In 2018 at the family conference we asked attendees to provide information on how the NNPDF can best help members of the following communities:

  • Priority Pediatric Support Needs
  • Priority Adult Support Needs
  • Information, Referral & Advocacy Needs
  • Ways to Support Families Anticipating/Navigating Grief

Families were asked to provide input on two of the topics during this session. This information received will continue to move the NNPDF forward. Following the 2017 conference, priority information was shared and we listened – we have now hired a new Executive Director, Joslyn Crowe, and are running a pilot program for Family Services. Community priorities in 2018 continue to include having the NNPDF become the main source of information and resources by providing up to date educational materials and resources for families during all phases of the Niemann-Pick Disease journey.

Common community needs across all groups included educational materials such as “how to” guides focusing on various aspects, family to family connections, providing a platform to families to connect electronically on a regular basis either with a regularly scheduled webinar or other message-based system providing immediate feedback from other families. The need for up to date, easy to read and understand educational materials is a large community need across all phases of the disease spectrum. These materials can be used to help raise awareness as well as provide specific disease education to medical and educational professionals as well as to help family and friends understand the disease process. The NNPDF is currently reviewing available educational materials and is working to determine what additional disease specific educational materials will be created.

Here are the priority needs identified by the Niemann-Pick community in 2018 at the conference:

Adult Support Needs:

  • Guardianship guidance
  • What if I can’t care for my child
  • State and regional family contacts
  • Educational fact sheets
  • How to transition from pediatric to adult medical care

Pediatric Support Needs:

  • Increased Niemann-Pick disease awareness
  • How to understand clinical trials and potential treatment options
  • How to navigate an IEP
  • How to advocate
  • Coping tactics: mentally, emotionally and physically

Information, Referral & Advocacy Needs:

  • Be an accurate information source
  • Educational booklets/handouts and handouts with clear and concise information
  • Funding sources to assist families with conference travel
  • Resources to help navigate private and public health insurance
  • List of recommended durable medical equipment
  • Support and resources for the older patient population and their caregivers

Families Anticipating/Navigating Grief Needs:

  • Support through the entire process – diagnosis to death and beyond
  • How can we keep bereaved families involved – the community needs you
  • Help to find a new normal during the journey
  • Continued emotional support – keeping families connected through web chats, etc.
  • Additional anticipatory grief sessions at conference
  • Additional personal family speakers at conference – follow-up professional presentation with a family experience

As 2018 is winding down, we have plans to begin implementation on these suggestions. We will be offering two webinars in the month of October: a webinar on the International Niemann-Pick Disease Registry and the U.S. Launch on Wednesday, October 10th at 8:00 pm EST/ 5:00 pm PST, and a webinar on the Differences between Expanded Access Programs and Clinical Trials later in the month. Please stay tuned for more information and thank you for your help and guidance.

Please email familyservices@nnpdf.org if you wish to share additional information.

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