Opportunity Details
Education Presenter
Volunteer Position/Role Title: Education Presenter
FSHD Society Project/Department: Patient & HCP Education/Advocacy & Education
FSHD Society Staff Contact: Ashley Ferreira, Director of Education
Position/Purpose:
The FSHD Society Education Presenter is a passionate and knowledgeable healthcare professional dedicated to educating and empowering individuals affected by FSHD. This role involves delivering presentations, lectures, and interactive discussions at FSHD Society events, including FSHD 360 conferences, FSHD University webinars, and the Connect Conference. The presenter will share expertise, provide critical insights, and help advance awareness, education, and care strategies for both healthcare providers and the FSHD community.
Key Responsibilities and Tasks:
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Serve as a guest speaker or panelist at FSHD Society events, providing expert knowledge on FSHD research, treatment advancements, and patient care
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Develop and deliver engaging presentations tailored to healthcare professionals, patients, caregivers, or researchers
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Translate complex medical and scientific information into clear, accessible content for diverse audiences
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Participate in Q&A sessions and panel discussions to address community questions and concerns
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Collaborate with the Director of Education to align presentations with current knowledge gaps and educational priorities
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Stay up to date on FSHD research, clinical trials, and emerging treatments to provide the most relevant and accurate information
Skills Needed/Qualifications:
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Healthcare Professional – Background in neurology, physical therapy, rehabilitation medicine, genetics, or related fields
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(Preferred) Expert in Neuromuscular Disorders – Has a strong foundation in FSHD research, patient care, and emerging treatments
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Strong Communicator – Able to convey medical concepts clearly to both professional and lay audiences
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Empathetic & Supportive – Understands the challenges of living with FSHD and speaks with compassion and authenticity
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Committed to Education – Dedicated to advancing FSHD awareness and improving patient outcomes through education
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Experienced Presenter – Comfortable with public speaking, virtual presentations, and panel discussions
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Engaging Speaker – Communicates complex medical information in a clear, relatable, and compelling way
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Collaborative & Adaptive – Works well with FSHD Society staff, fellow presenters, and community members
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Tech-Savvy – Familiar with platforms like Zoom, PowerPoint, and webinar software for virtual presentations
Location/Setting:
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In-Person events, such as Connect, 360s, etc.
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Virtually from home or from office/clinic setting
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Zoom meetings/conference calls as needed
Community Education
Age Minimum (with Adult): 1+
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