Rare Disease Day!
credit: https://www.rarediseaseday.org/article/what-is-rare-disease-day WHAT? Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the...
Events
Pumpkin Nights at The Scottsdale Princess
Pumpkin Nights at The Scottsdale Princess Come and join in the fun filled time at the Scottsdale Princess! Complimentary Pass from ANPAD per patient includes Admission...
Cruise the Zoo
Yes you heard it correctly... Cruise the Zoo! Cruse the Zoo! Have you signed up for camp? We have exciting news. Cruise the Zoo May...
About Us
Arizona Network for PKU and Allied Disorders (ANPAD) was founded in 2011 by PKU parents and medical professionals to fill the void of support groups offered to patients and families effected by PKU and allied disorders. Our mission is to help individuals and their families adhere to proper medical treatment, supply information on the latest research and treatment options, raise public awareness of PKU and Allied Disorders and create a support network for patients and their families to learn, connect and encourage each other.
Check Us Out
Camp Knot a Phe Family Camp in Prescott
ANPAD's annual family camp for individuals with metabolic disorders (that are Arizona residents) requiring a low protein diet and their family members.
Camp Knot a PheFAQ
What is PKU and allied disorders?
Phenylketonuria (PKU) is a rare, inherited metabolic disorder that inhibits a child from utilizing the essential amino acid, phenylalanine (Phe). PKU is caused by a deficiency of phenylalanine hydroxylase (PAH), normally produced by your liver. It is a recessive genetic defect that causes excess build up of (Phe) in the body, resulting in damage to the brain and central nervous system if untreated. Amino acid disorders (AAs) are a group of rare inherited conditions. They are caused by enzymes that do not work properly. Allied disorders are related genetic defects such as Citrullinemia, Maple Syrup Urine Disease (MSUD) and Organic Acidemias (OAs) that result in toxic effects on the brain and body.
My child has just been diagnosed, what now?
Having a child effected by a genetic disorder can be confusing and frustrating, but we are here to help. First, talk to your doctor about diet plans, blood testing and medical options. We also provide many resources including medical research, diet planning and sources for specialized food and formulas.
I am an adult effected by PKU, what are my options?
You are not alone. Maintaining a strict diet and accessing proper medical care can be difficult. We offer a support group for families + adults and educational events such as cooking classes or diet planning guides.
How can I help?
Consider donating today. We are an accredited 501(c)(3) non-profit that continues to serve its mission improving the lives of those effected by PKU and allied disorders. https://goo.gl/yhYFYc You can also support ANPAD as a volunteer at any of our events, including charity dinners and Camp-knot-a-phe.
Why is newborn screening so important?
Most of the screened disorders are inherited but most babies with disorders have no prior family history of the disorder. There is no way to tell whether a baby will have a disorder without testing so all babies are at risk. Even though the risk of a disorder is small, it would be tragic to have a baby who was not screened who later suffered permanent damage because diagnosis was not possible until symptoms appeared. Babies are tested for 29 core disorders including hearing loss on the Recommended Uniform Screening Panel from the U.S. Department of Health and Human Services (HHS).
Features
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Resources
Find detailed information on genetic disorders, specialized food and recipes and other helpful resources
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Community Events
Check our calendar for events, Find out what is happening in the ANPAD community and learn about previous events
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Programs
Learn all about our Poppets program for children and annual Camp-Knot-a-Phe summer camp hosted in Prescott, Arizona