Help with Medical Nutrition
Did you know that you can receive personalized help from the MNT4P program if you or your child are struggling with coverage of medical food/formula and low protein modified foods?
If you live in the State of Georgia, you don’t have to go without the medical nutrition you need. This program is available to PKU and other Inherited Metabolic Disorder patients. Click or tap here for information.
SERN Emergency Toolkit
The Southeast Regional Genetics Network (SERN) Consumer Alliance is a working group of passionate parents, patients, caregivers, and advocates across the Southeast that represent an array of rare genetic disorders. SERN’s areas of focus include advocacy, caregiver support, genetic testing, newborn screening awareness, and emergency preparedness. SERN has recently prepared an “emergency toolkit” specifically for individuals with rare disorders. Follow this link for more information.
National School Lunch Program – It’s Your Right!
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 for their special dietary needs. Cambrooke Therapeutics and Georgia PKU Connect recently held a Webinar describing resources that are available to assist you in taking advantage of this program. If you weren’t able to attend the Webinar, you can view a recording of the Webinar here. (Note that to view the Webinar you will be asked to download and install a browser “helper” application. Follow the instructions to do this.) If you are interested in this program, watching this Webinar is a great place to start.
Georgia PKU Connect is also in the process of developing an Online Toolkit, complete with templates that can be customized for your specific situation and many other resources, so check back here for more information to come.
Cambrooke Reimbursement Assistance
In addition to being a great supplier of special dietary products, Cambrooke Therapeutics offers additional assistance to individuals with PKU. If you are having difficulty obtaining insurance coverage for formula, Cambrooke can help. Through their CAMBROOKEcare™ program, they provide Specialists who can assist with:
* Formula and food reimbursement assistance
* Patient financial assistance program
* Help with co-pays.
Contact Cambrooke for more information.
The Adventures of Ruby Pricklebottom
The Adventures of Ruby PrickleBottom” is a children’s book written by Georgia’s own Anna Marie Parker and Brandon Keith Parker. This book for children is a great way to talk to kids about the PKU diet and lifestyle to help them to better understand it. Available at Amazon.
Contact Information for the PKU Clinic and Emory Resources in Georgia
Emory Clinic Department of Human Genetics
1365 Clifton Road, Building B, Suite 2200
Atlanta, GA 30322
Emory Genetics Patient Care
Emory Metabolic Genetics Clinic
National PKU Alliance
Georgia PKU Connect is a member of the National PKU Alliance Affiliate Council!
Other Key Resources
- Instructions for Emory Patients Submitting Filter Papers
- PKU Medical and Dietary Guidelines
- Information and Tools for Managing PKU in School
- Insurance Coverage News and Advocacy Tools
- My PKU Binder (comprehensive manual on effectively managing PKU on a daily basis)
- National PKU Alliance
- National PKU News
- HowMuchPhe.org (web-based PKU diet management tool)
Medical Food (Formula) and Low-Protein Food Companies
- Abbott Nutrition-Therapeutic Products
- Nutricia Metabolics
- Ener-G Foods
- Lil’s Dietary Shop
- Mead Johnson Nutrition
- Nutricia North America
- PKU Perspectives
- So Delicious Products
- Taste Connections
- Trusted Durable Medical Equipment Companies-Metabolic Formula
Websites of Interest
- American College of Medical Genetics
- Cook for Love
- Emory University, Department of Human Genetics
- EveryLife Foundation for Rare Diseases
- Genetic Alliance
- How Much Phe
- National Coordinating Center for the Regional Genetics Networks
- National Institutes of Health (NIH)
- NIH Clinical Trials
- National Organization for Rare Disorders (NORD)
- National PKU Alliance
- National PKU News
- Homology Medicine Inc.
- Patients & Providers for Medical Nutrition Equity
- Rare Disease Legislative Advocates
- Save Babies Through Screening Foundation
- Singh Research Group
- Southeast NBS & Genetics Collaborative
- Southeastern Regional Genetics Group
- STAR-G PKU Fact Sheet
- State of Georgia Screening Information
KNOW OF A VALUABLE RESOURCE?
Do you have a resource that might be of value to the PKU Community? We encourage you to submit ideas here. We’ll do our best to post credible sources