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84: FSHD Radio Hot off the Press with Amanda Hill
Manage episode 345560727 series 3410030
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This month, our Hot off the Press guest is Amanda Hill. We are excited to introduce you to Amanda – she is FSHD Society’s newest staff member as the Director of Research and Patient Engagement. Amanda has been part of the FSHD Society community for many years as the Colorado Chapter Director and volunteer leader. She will be sharing about her role as well as information about True Cost of FSHD.
PACT (Patients Accelerating Clinical Trials) is your onramp to participating in all types of research. Whether it’s completing surveys, joining a clinical trial, or joining the upcoming PACT FSHD registry – an online platform where you will be able to contribute your information and access all types of research, including clinical trials.
The “True Cost of FSHD” survey is the first of its kind in the United States. Its purpose is to learn about the “hidden” costs to patients with FSHD and their family members.
PACT (Patients Accelerating Clinical Trials) is your onramp to participating in all types of research. Whether it’s completing surveys, joining a clinical trial, or joining the upcoming PACT FSHD registry – an online platform where you will be able to contribute your information and access all types of research, including clinical trials.
The “True Cost of FSHD” survey is the first of its kind in the United States. Its purpose is to learn about the “hidden” costs to patients with FSHD and their family members.
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