The FSHD Navigator program is leveraging a spectrum of tools to meet the needs of multiple stakeholders: researchers studying the disease, clinicians treating it, and most critically, patients and their families trying to live their best lives in spite of it.
For people living with Facioscapulohumeral Muscular Dystrophy (FSHD), receiving a diagnosis only invites a vast array of new questions, many of which clinicians aren’t equipped to answer. The FSHD Navigator adapted to fill in these gaps for FSHD families, using a relationship-centered approach to connect the community to information, guidance, and engagement.
Quite soon after its initial launch, the FSHD Navigator was being utilized by unexpected stakeholders: Clinicians looking for instructions ordering genetic testing; Contract research organizations recruiting patient panelists for studies; Social workers researching financial aid resources; and several others. The program was re-framed as a conduit for all stakeholders who come through our organization, and we quickly developed new structures to expand our capacity while still meeting our mission.
In its role as an information hub, the FSHD Navigator program has been growing as a resource itself: to identify trends among the patient community, knowledge gaps, and opportunities for collaboration.
We will demonstrate how we’ve grown the program in its inaugural year, and next planned steps. We will showcase which software tools, infrastructure, and external partnerships have been the most effective, and what were our stumbling blocks along the way. Intentionally agile, the FSHD Navigator program has always been intended to flex and adapt as the needs of the community shift. We aim to engage and empower the FSHD community, and share our successes with other rare disease groups along the way. We are all stronger by working together.