RESOURCES

Featured Resources:

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
(404) 778-8570
www.genetics.emory.edu
Map of Emory Clinic

Emory Genetics Patient Care

Emory Genetics Laboratory

 

National PKU Alliance

GET CONNECTED to the National PKU Alliance to receive monthly newsletters and important PKU updates! It’s super simple and FREE! Sign Up Now.

Georgia PKU Connect is a Member Organization of the National PKU Alliance!

 

Other Key Resources

 

Medical Food (Formula) and Low-Protein Food Companies

 

Websites of Interest

 

 PKU Georgia Online Support Group has gone social!

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‘Like’ our Facebook Page and join the conversation with other Georgia PKU community members.

 

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