ADVOCACY

One of the objectives of Georgia PKU Connect is to support efforts on behalf of the PKU community. Often these efforts are in conjunction with other organizations, particularly the National PKU Alliance. Please visit the National PKU Alliance Advocacy Page regularly to stay up to date on federal legislative activities and action alerts.

Helpful Documents:
U.S. Senate PKU Awareness Resolution (S. Res 627),
GMDI Position Statement on Medical Foods,
ACMG Efforts Lead to AMA’s Support of Health Coverage for Medical Food Products,
American Medical Association (AMA) Resolution 122 – Health Coverage for Nutritional Products for Inborn Errors of Metabolism,
Updates and Information about Federal Medical Foods Legislation.

ADVOCACY

This Takes One Minute…

September 8, 2018
The Medical Nutrition Equity Act needs more co-sponsors to get this bill passed this year!

Now you can send an email to your Members of Congress effortlessly in just minutes using the coalition email tool at this LINK. Please … (read more)

ADVOCACY

SERN Introduces Emergency Toolkit

July 17, 2018

Have you ever been traveling or faced with an emergency situation where you realized you weren’t fully prepared? We’ve all heard that we should be prepared for emergencies but for those with rare genetic disorders, there are some special considerations … (read more)

ADVOCACY

Medical Foods Coverage Update

July 12, 2018
A little more than a year ago, the Medical Nutrition Equity Act (MNEA) was introduced in Congress… Exactly what is MNEA? MNEA would ensure that public and private insurance covers medically necessary foods – medical formulas and low protein modified… (read more)
ADVOCACY

New Medical Nutrition Equity Act Coalition

March 6, 2018

The National PKU Alliance has teamed up with 29 other organizations to pass the Medical Nutrition Equity Act (MNEA) by 2018! Under the leadership of the National Organization for Rare Disorders (NORD), the newly formed Patients & Providers for Medical … (read more)

ADVOCACY

National School Lunch Program – It’s Your Right!

July 24, 2017

Did you know that PKU children are entitled to assistance under the National School Lunch program? It’s true. If your child attends a school that receives funding under the National School Lunch program, the school is required to make accommodations … (read more)