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2022 Scientific & Family Conference

Renaissance Nashville Conference Center
June 30-July 3 • Nashville, TN USA

a four day neuromuscular conference for both in-person and virtual stakeholders in congenital muscular dystrophy,
nemaline myopathy, and titin-related disorders

This event made possible in part by our generous partners

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Chan Zuckerberg Initiative

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Baxter Credit Union

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This conference is funded in part, through a Patient-Centered Outcomes Research Institute (PCORI)
Eugene Washington PCORI Engagement Award (#EACB-23111)

Scientific Symposium: June 30 - July 1, 2022
This 1.5 day meeting for researchers and clinicians will showcase our organizations' latest funded research projects, and discuss the path toward treatments as well as the current barriers for each of our neuromuscular subtypes.

This meeting will include high-level scientific language and concepts. During event registration, industry and nonprofit representatives, affected individuals, family members, and caregivers will be given the opportunity to request an invitation to the Scientific Symposium. Seating will be limited, and all attendees will be required to sign a Confidentiality and Nondisclosure Agreement each day you attend this meeting. Invitation requests will be honored on a first-come-first-serve basis, with seat blocks reserved for each condition subtype.

Members of the affected community won't miss out on the information presented during this meeting: you will have the opportunity to hear from our experts during the family conference
and ask questions.

Organization-Specific Programming, Friday Afternoon, July 1
Following the conclusion of the scientific symposium Friday morning, the following organizations will host condition-specific programming.

 

  • Cure CMD: Externally-Led Patient Focused Drug Development Meeting (PFDD) in partnership with the FDA for Collagen 6, Dystroglycanopathy, LAMA2, LMNA, SELENON. Limited seating, reservation required (through event registration), meeting will also be live streamed and recorded.
     

  •  A Foundation Building Strength for Nemaline Myopathy: Nemaline Community Family Advisory Board Meeting (Invitation Only)
     

  •  Team Titin: Titin Case Report Conference, Cardiac Care Guidelines Development Meeting (Invitation Only)


 

Family Conference: July 1 - 3, 2022
This two day conference for affected individuals and their families will kick off Friday afternoon at 4:30pm with conference check-in and a welcome reception. Saturday and Sunday will include sessions on research updates and the latest medical guidance from key scientific and clinical experts. In addition, we will be offering bonus sessions around quality of life topics, Kids Camp and Young Adult programming, along with many opportunities to interact with other community members. All sessions will include an interactive Q&A/discussion with our speakers. Programming will end at 3pm (local time) on Sunday.

 

Two Attendance Options: In Person and Virtual
While 2022 SciFam will be a hybrid event (with both in-person and virtual attendance options available), we greatly encourage you to consider joining us in person to maximize your opportunity to interact with your peers.
 

For our in-person guests, this year's conference will be held in Music City USA - Nashville, Tennessee, with lots of nearby activities to explore and enjoy. Be sure to check out our Nashville Visitors Guide to help you make the most of your visit.

For our virtual guests, we plan to live stream and record most scheduled sessions, with optional interactive features to increase your immersion. We are also working to provide you with virtual-only networking opportunities during agenda breaks to help keep the conversation going. Unfortunately, we are unable to live stream or record Kids Camp or in-person evening socials.

Affected Community Scholarships
Cure CMD, A Foundation Building Strength, and Team Titin will offer a limited number of scholarships for affected individuals and their families/caregivers who want to attend in person, to help defray some of your costs. Learn more and complete an application.

Terms of Registration

Be sure to thoroughly read through our Terms of Registration to be fully informed about COVID protocols, refund policy, and other important information before you register.