Family Service Coordinator

The Cornelia de Lange Syndrome (CdLS) Foundation is a national nonprofit, incorporated in 1981 and headquartered in Avon, CT. We are the only organization in the United States that addresses the constellation of needs experienced by individuals with CdLS and their families. At present, the CdLS Foundation serves almost 16,000 individuals, including individuals with CdLS, their families, and healthcare and educational providers. The CdLS Foundation's mission is reflected in our slogan: Reaching Out, Providing Help, and Giving Hope. We are an educational and family support organization that exists to help families in their journey from diagnosis through the lifetime of challenges CdLS can present.

The Family Service Coordinator provides information and support to families navigating this rare disease and the special needs landscape. A unique combination of social work skills and compassion is an important component for success in this role. This is a full-time position with the option of a hybrid schedule.

Job Description

Key Responsibilities:

• Learn and become an expert in Foundation programs and services
• Help families obtain accurate medical information and access medical care, educational services and local community resources required to meet their family’s needs, including familiarizing the family with all the services and educational materials the Foundation offers.
• Help families becoming stronger advocates for their family member with CdLS in medical and educational settings; share resources that help families manage the mental health and well being of their family.
• Facilitate vital connections with other families, connecting with families via telephone, email, text, video calls and at in
• person CdLS events.
• When presented with a question beyond the professional scope of the Family Service Coordinator, obtain and share guidance from members of the CdLS Clinical Advisory Board (CAB) through the Ask The Expert process.
• Collaborate with families to plan, host and attend Family Gatherings multiple times per year instates across the country.
• Coordinate, recruit and attend multi-disciplinary clinics.
• Participates in planning organization wide events related to such as Rare Disease Day, Remembrance Day, Sibling Day, Regional Retreats, etc.
• Collaborates with CAB members and CdLS Foundation Staff to plan and host clinical webinars.
• Create and analyze reporting on Family Service Department activities, using data to identify unmet needs and segments of the population the Foundation can better serve.
• Serves as project manager for certain initiatives that increase the breadth of services offered by the Family Service Department.
• Other duties as assigned.

Knowledge and Skill Requirements:

1. Exceptional verbal and written communication, presentation and organizational skills.
2. Familiarity with key performance indicators and working successfully toward stated goals. Proven ability as self-starter, ability to seek consultation as needed and work as part of a collaborative team.
3. Computer literate in Microsoft office suite: WORD, excel, PowerPoint and Outlook, ZOOM or other video conferencing software, ability to learn documentation and reporting from a Customer Relationship Management system.
4. Available for travel four times annually to attend Foundation events.
5. Bachelors' degree in social work (BSW) or related field with prior work experience within a healthcare, behavioral health or special education setting required. MSW or Master degree in a related discipline preferred but not required.
6. Familiarity with key performance indicators and working successfully toward stated goals. Proven ability as self-starter, ability to seek consultation as needed and work as part of a collaborative team.
7. Bilingual is a plus