Finding your local “village”: “Alone we are Rare, together we are Strong” – NORD
HCU Network America is just one of many organizations across the country that help provide community to those with Homocystinuria. Here at HCU Network America, we firmly believe patients and their caregivers are more successful when they have a community to support them, not just online, but locally (or regionally) as well. Across the country many PKU organizations include what they call Allied Disorders. Allied disorders include other amino acid based disorders, such as classical Homocystinuria.
Arizona Network for PKU and Allied Disorders (ANPAD)
ANPAD's mission is to help individuals with PKU and Allied Disorders adhere to their treatment, inform families of the latest research and treatment advances, raise public awareness of PKU and Allied Disorders and create a support network. This is accomplished through camps, cooking workshops, educational seminars, online and print publications and newsletters, and recreational activities which bring families together to learn, share ideas, and encourage one another.
California Coalition for PKU and Allied Disorders (CCPKUAD)
CCPKUAD is a 501(3)c non-profit organization. We are a volunteer group of individuals committed to provide support, information, education and advocacy to individuals with PKU and other inborn errors of metabolism
We have three key parts to our mission for the PKU Organization of Illinois. First, and one of the most important, is to support the person, and their families affected by PKU and/or Allied Disorders. Second, is the organization will spread information and awareness of PKU and Allied Disorders to the PKU/Allied Disorder community, as well as, the outside community. Lastly, constantly raising funds to aid in the continued research of medical updates and changes of PKU and Allied Disorders. As part of our fund raising, we will stay connected with local and national lawmakers to be informed and inform others of the medical changes and necessary events related to PKU and Allied Disorders.
Louisiana Metabolic Disorders Coalition
LMDC is a coalition of parents, friends and people affected by metabolic disorders. The Facebook page is a place for sharing thoughts, announcing gatherings in our state or around the country, and sharing tips for making life with metabolic disorders easier.
Mississippi Metabolic Foundation
MMF's mission is first and foremost to raise awareness, educate, and support those living or caring for someone with genetic inborn errors of Metabolism. We advocate for the expansion and implementation of Newborn Screening and access to resources available for caregivers/patients. MMF promotes and supports further advancements in legislation, research, trials/studies, therapies, treatment, and cures for metabolic disorders/rare diseases. We want to increase the community involvement in MS for rare genetic metabolic disorders and help families of children with metabolic disorders navigate their rare disease journey.
The New England Connection for PKU and Allied Disorders, Inc. (NECPAD) supports families with PKU, HCU and Allied Disorders in Connecticut, Rhode Island, Massachusetts, Vermont, New Hampshire, and Maine. NECPAD supports individuals and families with financial assistance, up-to-date information regarding new therapies and medical treatments, scholarships, networking, and social events.
The mission of the Tennessee PKU Foundation is to provide support and education to individuals and families affected by PKU and similar metabolic disorders, raise community awareness, support PKU research, and promote the overall health and well-being of Tennesseans living with PKU and similar metabolic disorders.
We are a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.
Organic Acid disorders that overlap with HCU are Cobalamin C, D, F, J, and X