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Saturday, September 14, 2013

MEBO talks to US President on NORD Conference Call

As an Organization Member of the National Organization for Rare Disorders (NORD), MEBO was invited to a

Conference call with the President of the United States, Barack Obama, and the Health and Human Services Secretary, Kathleen Sebelius

on Monday, September 16, at 1:40pm EDT to discuss the October launch of the Health Insurance Marketplace. Of course, as members of NORD, our focus will be on how this will affect Rare Disorders, including TMAU and other body and breath odor conditions. Our very own MEBO Community Outreach Director, Cheryl Fields, MBA, PhD (ABD), Human Resources Consultant, was granted a reserved space to join the call to represent our cause.

Our entire international community is most grateful to Cheryl for stepping up to represent us. We look forward to hearing her account of this experience, which will be posted in this blog. The MEBO goal to bring our cause to our political leaders has reached the highest levels in the US government, and I hope that good relationships can be established with this opportunity for future communications. We have reached great heights as an organized community with this opportunity, and we thank NORD for making it happen for us.

Cheryl, remember that you have our whole community praying and thinking of you on Monday afternoon, in camaraderie and support. All the best to you!

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
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A EURORDIS and NORD Member Organization 

3 comments:

Anonymous said...

woe . will this be recordable ? if so I hope to view it at some point . Just a screen capture of the Pres would be pretty great for the cause !

J

Sep 14, 2013, 7:25:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

It would be great if NORD would record it, but I don't know if it would be possible. Otherwise, Cheryl will give us her account of the experience. It's great that NORD has brought a spotlight to Rare Diseases, and that we get an opportunity to say our piece. One drop at a time in the bucket will eventually fill it up. This one should be a big drop.

Sep 14, 2013, 7:53:00 PM
Pete said...

great stuff

Sep 16, 2013, 9:06:00 AM
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