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About Us

Our Mission:

To provide support and services to all individuals and families with PKU and allied disorders, and to encourage research and increase public awareness of the conditions.

Building on the past to influence the future: the history of NECPAD

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. At the time, the Internet was not around as a source of information as it is today.

Therefore, parents of children with PKU and similar conditions were very dependent on their metabolic clinics for information and resources. They had little opportunity to speak with and interact with others in similar situations, especially from different clinics.

A small support group was started by two parents getting together to talk about their children’s conditions, then it became three parents, and then four and so on. These informal get-togethers continued to grow and it didn’t take long to realize there was a significant need for an organization to provide support and information to families and individuals with these conditions in New England.

In 1995, the official New England Connection for PKU and Allied Disorders was established and became a 501(c)(3) non-profit organization. And the rest is history... so Welcome to the Family.

NECPAD benefits and supports individuals and their families with inherited metabolic disorders including:

  • Phenylketonuria (PKU)

  • Homocystinuria (HCU)

  • Maple Syrup Urine Disease (MSUD)

  • Organic Acidemias

  • Tyrosinemia (TYR)

  • Urea Cycle Disorders (UCD)

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