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Title:  Family Services Manager

Part-time (25 hours per week)

Location: Remote

Reports to:  Executive Director

Start Date:  August 1, 2018

Goal: To provide support to families and affected adults at every stage and connect them with resources to cope on a day-to-day basis. To develop, maintain and execute communications with families and other NNPDF contacts to keep them abreast of current news and events relating to NNPDF’s mission. 


About the Role:

The National Niemann-Pick Disease Foundation is seeking a Family Services Coordinator to develop and implement a Family Service program for Niemann-Pick disease patients and families.

This is a 4-month pilot project to run from August to November. Following this, a program evaluation will be completed to determine the next phase of the Family Services program.  This is a unique opportunity for someone independent and motivated to use his or her skill set to create and implement a Family Services program for a unique patient population and to grow the program over time.


Essential Functions:

  • Connect with Niemann-Pick disease patients and families at different stages of their discovery process, including newly diagnosed families and individuals looking for a connection to NNPDF and resources to help them adjust into the realities of the disease.
  • Monitoring NNPDF social media sites for relevant information and patients or families in need of contact.
  • Developing distance education for patients and families related to a variety of topics important to them, including those who are bereaved.
  • Share relevant information to engage and empower patients and families
  • Participation in annual Family Conference, August 2-5, 2018
  • Developing family service programs such as “mentorships” for new families
  • Other duties as needed by Executive Director, related to this position



  • Exceptional alliance building with families
  • 3-5 year+ experience with counseling, social work, family services and/or community relations
  • Must have high levels emotional intelligence and compassion for others
  • Excellent interpersonal, writing and presentation skills
  • Experience with, and excitement for, family support programs
  • Proficient at social media usage and content generation
  • Master of Social Work or Community programming experience preferred
  • Prior experience with rare disease population preferred



  • Salary based on education and commensurate experience. This is a Contract position.


To Apply:

Please submit cover letter and resume via email to  Applications will be accepted on a rolling basis.


About National Niemann-Pick Disease Foundation: 

NNPDF is a non-profit, unbiased advocacy and family support organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease, through education, collaboration and research.  For more information visit

07/02/2018 jjb