Updates from The National CMT Resource Center

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Updates from The National CMT Resource Center

The Hereditary Neuropathy Foundation was awarded a

cooperative agreement with the CDC to set up a new National CMT

Resource Center. As of October 1st, 2010, the task force to set up the

Resource Center was assembled.

The purpose of the Resource Center is to " promote collaborative

relationships between individuals who have CMT and their health care

providers through education, training, and dissemination of

information to promote accurate diagnosis, optimal treatment, and well- being

for individuals who have CMT " .

In order to fulfill this goal successfully, the task force must have a

comprehensive understanding of the disease including how CMT impacts the lives

of those affected, how to work within the general medical community, how to

determine the extent to which knowledge about the disease exists within various

practitioner specialties and how that in turn affects diagnosis and treatment of

those with CMT.

The first step of setting up the Resource Center is for the task force

to assess the needs for information in both the CMT community as well

as the medical community. In the coming weeks, we will conduct

several focus groups with persons who have CMT and their caregivers and doctors,

to gather information and feedbacks, to build a basic understanding what

information is needed. Everyone in the CMT community is encouraged to sign up

for the appropriate focus groups.

I am , the Marketing and Social Media Manager for the Resource

Center, and I will be keeping you all updated about the progress we

are making to set up the National CMT Resource Center. I will post the

focus group details in another post. Please sign up if you are

interested in contributing your ideas or spread the word about the

focus groups!

Stay tuned for more updates about the National CMT Resource Center!