Title: Family Services Manager
Part-time (25 hours per week)
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.
- 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.
Please submit cover letter and resume via email to firstname.lastname@example.org. 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 www.nnpdf.org