What does ANPAD do?
Since our inception in 2011, ANPAD has remained steadfast in our commitment to filling the void of support groups for individuals and families affected by PKU and allied genetic disorders. Founded by dedicated individuals, including PKU parents, patients, and medical professionals ANPAD is still 100% run by volunteers !
ANPAD serves individuals and families affected by rare metabolic disorders such as Phenylketonuria (PKU) and allied genetic conditions like Citrullinemia, Maple Syrup Urine Disease (MSUD), and Organic Acidemias (OAs). These disorders, although rare, can cause significant harm to the brain and body if left untreated. Babies are tested for these disorders as part of the Recommended Uniform Screening Panel from the U.S. Department of Health and Human Services (HHS), which is crucial to early detection and treatment which helps prevent permanent and severe damage.
Our mission at ANPAD revolves around providing crucial support, organizing fundraising events, hosting support groups, and facilitating a summer camp tailored to individuals with metabolic disorders. ANPAD organizes an annual camp, Camp Knot a Phe, a transformative experience for those affected by metabolic disorders. This camp provides a haven where individuals and families find support, education, and connections. It empowers attendees to navigate the challenges of managing these conditions while fostering a sense of community and understanding. Camp Knot a Phe, nestled in the beautiful tall pines just outside Prescott, AZ, has been a cornerstone of our efforts. This camp, made possible by the generosity of sponsors, donors and is run 100% by volunteers.It remains a pivotal event for our community. It offers a weekend filled with not only enjoyable activities but also a platform for education, connection, and empowerment.