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NORD UPDATES, 11/6/2013

PostPosted: Wed Nov 06, 2013 8:49 pm
by drstillstanding
Opportunities You May Want to Explore

Dear NORD Member Organizations:

We wanted to be sure you are aware of the following opportunities in case you may want to take advantage of them.

DIA Patient Advocate Fellowship Program

Representatives of 501(c)3 organizations in the U.S. or registered charities in Canada serving constituents with major diseases or rare/orphan diseases may apply for DIA Patient Advocate Fellowship Program Scholarships to attend the DIA annual meeting June 15-19 2014 in San Diego.

The deadline to apply is Friday, January 31. Applicants will be notified the week of March 1, 2014. View complete details here.

NCCN Patient Advocacy Summit

The National Comprehensive Cancer Network will host a Patient Advocacy Summit on Friday, Nov. 22, at the National Press Club in Washington DC. The topic will be "Health Care Reform in 2013 and Beyond."

The event will bring together oncology patient advocacy groups, patients, providers, payors, policy-makers and others to discuss topics such as the definition of essential health benefits, the impact of health care reform on cancer patients, state health exchanges, etc.

A limited amount of funding may be available through NCCN for travel and accommodation expenses for those not in the DC area. More about this event.

American Academy of Neurology Epilepsy Measure Development Work Group

The American Academy of Neurology (AAN) will be updating its quality measures for epilepsy and is inviting patient advocacy organizations, medical societies and others to submit a nominee(s) for this new work group.

The nominee will work in close collaboration with a 20-15 member work group of representatives from epilepsy patient advocacy organizations, medical specialty societies, insurers and other relevant stakeholders. It will review the existing AAN epilepsy measures and consider the development of new ones for use in quality improvement, pay for reporting, accountability, and/or maintenance of certification performance in practice programs.

The deadline for submitting nominations is November 20, 2014. Requests for additional information, and nomination and conflict of interest forms, may be sent to Rebecca Swain-Eng by email (rswaineng@...), phone (612 928-6121) or fax (612 454-2744).

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