Advocacy Resources – Summer 2022

Whether you’re gearing up for Rare Across America, or reaching out to meet you Senators and Representative when they are in-district in August, these resources will help you advocate fo the Medical Nutrition Equity Act (MNEA)!

Questions? email [email protected].

Join us at this event, presented by PKU News & the NPKUA
Advocacy = Telling Your Story, Online Event: August 11th at 4pm ET.
Registration link:

This link to helps you:

  • Find out if your legislator is currently a co-sponsor of the bill
  • Contact your legislators through their web site (a great way to set up an in-district meeting during the August recess) 
  • Send a customized tweet directly to your legislators asking for/thanking them for their support for the MNEA

Download these materials:

In August, your legislators are often local
Use the links above to contact them to set up meetings (in-person or virtual) to discuss the MNEA and use the text below to compose your request for a meeting:

Dear [NAME],

I am reaching out to request a meeting with [Rep/Sen NAME] in the [state/district office] to discuss the pressing issue of access to medical nutrition.

The ongoing formula shortage has shown how important these products are to millions. This shortage has greatly affected [children like mine/people like me] living with PKU, a rare inherited disease. People with PKU depend upon specialty formulas for the bulk of their nutrition, lifelong, and access to these products is harder now than ever. Even after supply is restored, thousands will still be unable to afford their formula due to inadequate insurance coverage for this essential treatment, which have devasting affects on their health. The bi-partisan Medical Nutrition Equity Act (H.R. 3783/S.2013) would help alleviate these long-standing access barrier for people with PKU and similar diseases.

[insert VERY BRIEF personal story here – 2-3 sentences]

Please let me know if [Rep/Sen NAME] has availability in the coming weeks while [he/she] is at home in [state/district] to discuss the Medical Nutrition Equity Act and the ongoing formula crisis. Thank you.