Emory University’s Annual Metabolic Camp offers a holistic approach to the nutrition management of PKU and MSUD–empowering females ages 12 and older to make healthy choices and take charge of their futures as they live, learn, and play in a supportive camp environment. Our model research-based camp, with a focus on Maternal PKU, has been supporting adolescent girls and young women for more than two decades.
MNT4P’s provider wizard can help point you toward existing resources from your formula company.
In addition to the support services that MTNT4P provides, other organizations have created resources to serve as a guide to patients living with metabolic disorders.
Baby’s First Test serves as a starting point for learning more about the newborn screening process. Resources include educational and family support.
National Organization for Rare Disorders (NORD) is a hub for tools, resources and research around rare diseases. NORD informs and educates patients and families, assists with health care access issues, and provides social platforms for connecting with the rare disease community.
Children’s Medical Services is a program of the Georgia Department of Public Health that provides healthcare services to children with chronic medical conditions living in low income households in the state of Georgia.
The Southeast Regional Genetics Network (SERN) and Genetic Metabolic Dietitians International (GMDI) partnered to develop publicly accessible nutrition management guidelines and toolkits. These resources cover the evaluation and management of PKU, MSUD, and Propionic Acidemia (PROP).
The SERN Consumer Alliance developed an Emergency Preparedness Toolkit for Genetic-Based Inherited Metabolic Disorders. This toolkit consists of disorder-specific lists of supplies needed in case of emergency, as well as a general list of basic emergency preparedness supplies. It is available to be printed, posted, and shared.
Low-Protein Modified Foods (LPMF) Program
MNT4P has started a new partnership with Cambrooke Therapeutics that will allow you to order monthly supplies of LPMF directly from Cambrooke at no cost to you. In order to be eligible for this program, you must:
- Be actively enrolled in the MNT4P Program.
- Be on a metabolic diet that involves LPMF.
I am a patient who…
Living with PKU
Georgia PKU Connect supports and connects Phenylketonuria (PKU) patients and their families with needed support and resources.
National PKU Alliance offers support, education and advocacy to the PKU community. The Alliance also conducts research that seeks a cure.
PKU.com offers a wealth of resources for patients with PKU, including a clinic locator, recipes, tips for disease management, and avenues for social support.
BioMarin is a pharmaceutical company specializing in rare genetic diseases. In addition to creating Kuvan, a medication that treats PKU, BioMarin also hosts an online community for PKU patients and their families.
The National Organization for Rare Disorders (NORD) offers medication, financial, and travel assistance for patients with PKU through their RareCare program.
Living with PKU, MSUD, Tyrosinemia, or any other inherited metabolic disorder (IMD)
Get Connected is an online community where you can connect with other families with the same disorder as your child(s) or family member(s).
HCU Network America provides resources, connects patients and families, influences state & federal policies, and supports the advancement of diagnosis & treatment of Homocystinuria (HCU) and related disorders.
Living with a urea cycle disorder
Horizon Pharma is the pharmaceutical company that created Ravicti, a medication that helps control ammonia levels in people living with urea cycle disorders.
The National Organization for Rare Disorders (NORD) offers medication, financial, and travel assistance for patients with Urea Cycle Disorders through their RareCare program.
The Good Days program offers assistance in helping families to overcome the burden of treatment costs for patients with several diseases, including Urea Cycle Disorders.
Accessing low-protein modified foods
PKU Perspectives is an online storefront offering specialized, low-protein food for people living with PKU, or other disorders with treatments that include low-protein modified foods.
Ajinomoto Cambrooke specializes in therapeutic nutrition and sells products formulated for people living with metabolic disorders and provides low-protein recipes including a low-protein cooking channel.
Taste Connections was created by the mother of a child with a metabolic disorder to share her own successes building a low-protein meal plan. Taste Connections sells low-protein food products and provides low-protein recipes, including tutorial videos and blogs.
Nutricia North America is a company that offers specialized formulas, low-protein modified foods, and additional services for people living with metabolic disorders.
Flavis is a company that offers low-protein modified foods.
Using medical foods
Abbott Nutrition manufactures several formulas for patients with metabolic disorders.
Cambrooke Therapeutics specializes in therapeutic nutrition and sells products formulated for people living with metabolic disorders.
Nutricia North America is a medical nutrition company with product lines including both medical foods and low-protein modified foods for people living with metabolic disorders.
POA Pharma North America offers medications and medical foods that include the PKU Easy Microtabs and PKU Go.
Vitaflo USA offers nutritional therapies for patients with metabolic disorders, specializing in those related to proteins, fats, carbohydrates and amino acids.
This Insurance Coverage Toolkit was created by Raenette Franco of Compassion Works Medical, LLC to assist patients and caregivers in understanding insurance terms for medical foods.