at Muscular Dystrophy Association, Inc. in Chicago, Illinois, United States
Job Description
Job Details
Remote Type
Fully Remote Travel Percentage
Up to 50%
MDA Overview:
At MDA, we believe our biggest asset is our combination of different backgrounds, cultures, and disciplines united to form one high-performing team. By bringing together people from different backgrounds, perspectives, and generations, we ensure that we all have access to the opportunities, relationships, and resources necessary to learn, grow and thrive. What we do starts with our people and the neuromuscular disease community we serve. As America's largest voluntary health organization covering research, healthcare, and advocacy for people with neuromuscular diseases, MDA is leading the way in improving the quality of life for those living with muscular dystrophy, ALS, spinal muscular atrophy, and dozens of related disorders - many first discovered and diagnosed by MDA supported scientists and clinicians.
Department Overview:
As the top of mind, reliable resources to the neuromuscular disease community, the Healthcare Services department plays a critical role in providing support, opportunities and resources to promote access to care and empower each individual. The Healthcare Services department is comprised of the Care Center Network, Family & Clinical Support, Medical Education, Operations, and Resource Center teams.
Position Description:
The primary responsibility of the Support Specialist, Family & Clinical Support is to support individuals, families and caregivers as they navigate living with neuromuscular disease. This includes but is not limited to supporting families as they attend and engage with MDA Care Centers and associated providers for clinical care, as well as through engagement opportunities. The Support Specialist is an essential member of the Family & Clinical Support Team and is responsible for ensuring that individuals across the US are engaged with and aware of MDA programs and engagements. While the Support Specialist will support the neuromuscular community in multiple ways, including through their clinical experiences, MDA Support Specialists will not at any time provide direct patient care or dispense medical advice.
Location: Remote work with up to 50% local & overnight travel required. Hiring locations are:
Western New York - Northern Indiana - Michigan - Ohio - Virginia - Georgia - Minneapolis, Minnesota
Aurora, Colorado - Boise, Idaho - San Francisco, California, - Phoenix, Arizona
What you'll do:
Develop and maintain a strong relationship between MDA, families, and caregivers, through Care Center visit attendance, virtual support, proactive outreach, responsive follow-up, and the execution of key MDA programs and engagements.
Support families and individuals in their MDA Care Center experience.
Execute family and community engagement and outreach activities and campaigns to support MDA initiatives across the organization, including, but not limited to in-person/virtual recreational events, community engagement activities, advocacy campaigns, DIY programs, and educational activities and programs within territory.
Gather and share insights in a coordinated way across the organization about the needs, interests and experiences of the family and caregiver community that MDA serves.
Identify families and caregivers who would like to become members and engage across MDA platforms and activities.
Leverage key learnings and collaborative opportunities to inform the development of community and family facing material and experiences to enhance the lives of the individuals we serve at MDA.
Offer membership information about MDA and the opportunity to register to those living with a neuromuscular disease, when appropriate. Additionally, the Support Specialist will be the first point of contact for individuals and families who have completed registration with MDA and are responsible for establishing an introductory relationship within territory.
Identify and document resources available to support the family and caregiver community at the national, regional, state, county, and local level.
Identify, document, and share through the proper process flow any resource gaps at the national, regional, state, county, and local level.
Collaborate across MDA teams and functions to execute the duties of the role.
Share substantive feedback from executed activities and engagements through the proper process flow to the appropriate MDA team lead.
Maintain internal databases with accuracy including tracking work product on appropriate and designated platforms.
Ensure MDA's ability to maximize mission impact through accurate, complete, and timely information capture.
Strive for continuous growth and identification of... For full info follow application link.
MDA is an Equal Opportunity/Affirmative Action employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, sex, national origin, disability, or protected veteran status.