As part of the Empowering the RARE Individual track from the 2023 RARE Advocacy Summit, this panel, Managing Life Without a Diagnosis, addresses challenges, questions, and opportunities for those living without a specific diagnosis. Topics include genetic testing basics, research studies, support services, finding community, and developing strategies to empower yourself or a family member in navigating life without a diagnosis.
Moderator:
Michele Herndon
Program Director, Patient Navigation Program, Undiagnosed Diseases Network Foundation (UDNF)
Panelists:
• Sarah Marshall
UDN/UDNF PEER
• Stephanie Tomlinson
UDN/UDNF PEER
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