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National PKU Alliance: Schedule In-District Meetings NOW! | News

Schedule In-District Meetings NOW!

Members of Congress will be working locally May 28 - June 1. Please schedule a meeting with them in your home state to discuss the Medical Nutrition Equity Act (Senate Bill: S. 1194 and House Bill: H.R. 2587). Asking for their support and co-sponsorship locally is KEY. Did you know Senator Grassley agreed to co-lead the MNEA with Senator Casey after a local meeting with two PKU grandparents? He did! Local meetings make a difference. Don't delay, WE NEED YOUR HELP!

Scheduling a meeting is easy! Check out the NPKUA Medical Nutrition Equity Act page for step-by-step instructions. You can also go directly to our phone scripts by selecting the links below.

YOU CAN DO IT!

Help the NPKUA keep a pulse on advocacy activities across the country. Please email katrina.swenson@npkua.org to let us know about your appointments. We can also connect you with other advocates in your area!

What do I do if I'm told my Representative or Senators do not have appointments available? Let the scheduler know this issue is very important to you and you would like to meet with a local staff member responsible for healthcare legislation in the next several weeks.

Need more bill info and materials to share with your U.S. Representative and Senators? Visit the NPKUA Medical Nutrition Equity Act page!

Have questions? We have answers! Email us!

About the Medical Nutrition Equity Act

If passed by Congress and signed into law, the MNEA would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs to provide coverage for formulas, low protein modified foods, and prescribed vitamins for all children and adults with inborn errors of metabolism and certain digestive disorders.

Thank you for your participation!

National PKU Alliance, Inc. | P.O. Box 1872 | Eau Claire, WI 54702

katrina.swenson@npkua.org | http://www.npkua.org

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Event Details
2018

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When
May 28thJune 1st, 2018

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What
Conference/Meeting

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Added
2018-05-24 by Rani Singh PhD, RD
SERN Highlights
November 2018

SERN Lunch and Learn Announcement Wed, October 24th 2018

SERN Lunch and Learn Announcement Wed, October 24th 2018

Please join us on

Wednesday, October 24that 12:00 pm (noon) at the

7th Floor Conference Room

Woodruff Memorial Research Building

101 Woodruff Circle  

for our

SERN Lunch and Learn Series.

A flyer is attached for your review.

Our speaker will be:

Allison Foley, MMSc, CGC

Certified Genetic Counselor

Lysosomal Storage Disease Center

Emory Department of Human Genetics

The title of her presentation is:

“Pompe Disease: Newborn Screening and Georgia Pilot Program Experience.”

Pizza will be provided

Please RSVP by Friday, October 19thto yadadev@emory.edu

Live presentation via internet is available to a limited number of sites.

Email astembr@emory.edu for web reservations.

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