The goal of Patients as Partners in Research is to advance the work of our Strategy to Accelerate Research (STAR) and enroll the patient community in the critical work of furthering the development of treatments, and ultimately a cure, for CMT.
One of the first projects belonging to our new research initiative is the establishment of a Patients as Partners in Research Focus Group. In partnership with the Cambridge, Massachusetts-based biopharmaceutical company Acceleron Pharma, the CMTA will bring together patients to participate in a focus group following the upcoming CMTA Patient/Family Conference in Fort Lee, New Jersey on June 16.
The aim of this focus group is to develop a greater understanding of CMT and gather information that will help advance the field and inform the development of new therapies. Topics to be discussed will include specific muscle weaknesses, CMT subtypes, healthcare utilization and current/developing treatment options.
To participate in the focus group, you must be 18 years or older with weakness in the tibialis anterior (foot drop, or difficulty lifting the front part of the foot). We are particularly interested in recruiting patients with CMT2 and CMT4 subtypes. The focus group will begin at 2:30 p.m. ET and last approximately two hours. The session is complimentary, and lunch will be provided.
This is an exciting opportunity to have your voice heard and to make a difference in the CMT community! If you are interested in participating, please fill out the form below.