Job Purpose:
The Programs and Outreach Coordinator will manage, facilitate, and evaluate programs offered by Dup15q Alliance and support the unique needs of the Dup15q Community by providing resources and family support through the Alliance and our partners. This individual should also be instinctively aware of the needs of children and adults with Dup15q syndrome and their parents/guardians.
This position description is not all-inclusive and there may be duties not noted that contribute to the organization's greater good.
Summary of Duties:
Family Support Programs/Outreach
● Coordinate, ensure implementation, and measure the success of Dup15q Alliance Connection Calls (Calls for Community Members by topic, age group, or language-specific)
Current calls:
General Community Connections Call, Spanish speaking Connection Call, New Family 101 (quarterly), and Bereavement call
● ensure volunteers lead Connection Calls or serve as the lead for monthly Connection Calls
● work with the Marketing Manager to communicate Connection Calls to the community
● track attendance
● answer follow-up community questions
● set measurable goals, track and survey attendees to ensure program value
● Sibshops: Host Sibshop workshops, utilize the Sibshops Book, hold workshops for siblings of children with special needs, and oversee requests for VIP Sibling and Parent Kits to be sent to our families. Place and track orders.
● Monitor Help Tickets and follow up with volunteers as needed on responding.
● Support Dup15q Family Gatherings by sending out invites, tracking RSVP’s, supporting communication for Family Gathering grants, and collaborating with teammates to ensure compliance and liability concerns are addressed
● Ship “Wrapped in Love Blankets” supporting those individuals with Dup15q syndrome who are in crisis or hospitalized. Track those individuals and parents/guardians in our main database and follow up accordingly.
● Manage volunteers who are leaders on Connection Calls and other family support initiatives
● Manage Compassion Experience - Ship materials, provide families with additional support in utilizing the materials, and track details with those requests.
● Building strong relationships with community members and partners in the rare disease space to provide up-to-date resources for families.
● Monitor our private Facebook Parent Support page to support our families in need by providing appropriate resources. Track those individuals and parents/guardians and follow up accordingly.
● Assist in overseeing projects with our Social Work Interns.
Other Duties
● Support our fundraising efforts by developing engaging family stories for events such as the yearly Big Give, Giving Tuesday, and Rare Disease Day.
● Working with the Marketing Manager to create awareness campaigns that would educate and engage the community.
● Support our partners and the Alliance by ensuring our “RARE” voices are heard by sending out surveys to our Survey Volunteer Team.
● Collaborate with other team members, in particular, the Marketing and Communications Manager, to ensure the publication of programs and tracking of community engagement through analytics.
● Communicate with other team members, in particular, the Business Manager, to ensure budgeting of family support programs and family gatherings.
● Create policies and procedure SOPs for family support programs and outreach.
● Support parents/caregivers through crisis calls from families needing resources.
General Responsibilities
● Carry out the mission of Dup15q Alliance
● Understand the importance of working as a team and owning your job functions independently
● Contribute to the team as a whole
● Maintain constant and clear communication with staff
● Exude professionalism when representing the Alliance
● Have empathy and compassion for the families we serve
● Participate in regular meetings with the staff and Executive Director
● Work with volunteers to provide a meaningful experience while further the mission of the Alliance
● Keep information confidential to protect the patients and their families
Qualifications
The following qualifications are the minimum requirements necessary to adequately perform the job. However, any equivalent combination of experience, education, and training that provides the necessary knowledge, skills, and abilities will be considered, subject to any legal and/or regulatory requirements.
General requirements:
● Must be passionate about the greater good of the Dup15q Alliance Community
● Flexible and adaptable to change
● Emotionally resilient; ability to work unsupervised; ability to make quick decisions
● Must have strong organizational skills and pay close attention to detail
● Must be a self-starter and highly self-motivated
● Able to relate well to a wide range of individuals
● Occasional travel for conferences, staff training, etc.
Education/Experience:
● Bachelor’s Degree
● Preference will be given to candidates with a connection to the rare disease community in particular to Dup15q Alliance community
● Nonprofit experience in a volunteer or paid capacity
● Demonstrates strong communication skills, both written and oral
● Must be comfortable learning and utilizing office technology systems including, but not limited to: Asana, Google Drive, Microsoft Office, Zoom
Job Type: Part-time
Pay: $20.00 - $25.00 per hour
Expected hours: No more than 15 per week
Benefits:
Patient demographics:
- Adolescents
- Adults
- Children
- Older adults
Schedule:
Language:
Work Location: Remote