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Useful Support & Resource Links

Below is a list of useful links for healthcare providers or patients in need of nutritional support for medical and dietary needs.

Inherited Metabolic Disorder Visual Teaching Aid:

Professional Organizations
National Organization of Rare Disorders (NORD)
NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

NBS Connect
NBS Connect will serve as an internet-based support network for parents, guardians and individuals with inborn errors of metabolism. NBS Connect will capture and analyze information related to inborn errors of metabolism in an effort to assess gaps in service, access to care and to develop best standards of practice for clinical management and connect families to research opportunities. NBS Connect strives to improve the quality of care of individuals with inborn errors of metabolism (IEMs).
Genetic Metabolic Dietitians, International (GMDI)
Society of Inherited Metabolic Disorders (SIMD)
Fatty Acid Oxidation Disorders
Fatty Acid Oxidation Disorder Association
Association for Glycogen Storage Disease (AGSD)
The Association for Glycogen Storage Disease was established in 1979 in order to create an organization which would be a focus for parents of and individuals with glycogen storage disease (GSD) to communicate, share their successes and concerns, share useful findings, provide support as needed, create an awareness of this condition for the public, to stimulate research in the various forms of glycogen storage diseases and have the results communicated – to the parents, affected individuals and the public – as soon as possible.
HCU Network America
The mission of HCU Network America is to help patients with HCU and related disorders manage their disease and to find a cure.
MSUD Family Support Group
The MSUD Family Support Group is a non-profit 501 (c)(3) organization for those with MSUD and their families and includes health-care professionals and others interested in MSUD.
Organic Acidemias
Propionic Acidemia Foundation
The Propionic Acidemia Foundation is a non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Oranic Acidemia Association
The Organic Acidemia Association is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders.
National PKU Alliance (NPKUA)
The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure. The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and PKU-friendly businesses to make a difference in the lives of people with PKU.

Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD)
The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD) is a non-profit 501(c)(3) organization, dedicated to improving the health and well being of individuals and families affected by Phenylketonuria (PKU) and related metabolic disorders.

National PKU News
National PKU News is a non-profit organization located in Seattle, Washington. It is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.

The Canadian PKU and Allied disorders
New England Connection for PKU abd Allied Disorders
NECPAD was created in the early 1990s to meet the need of several families in the New England area who were starved for information on PKU and other metabolic disorders.
Urea Cycle Disorders
National Urea Cycle Disorders Foundation
The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals.