WHAT WE DO
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 families and individuals with PKU and other inborn errors of metabolism (IEM).
We became an organization in 1981 formed by parents and our group was formerly known as PKU Parents of California.
In 2005 we changed the name to the California Coalition for PKU and Allied Disorders in order to provide support for other individuals with genetic IEMs. After a 4 year period of inactivity, the current group of officers resurrected the group in an effort to bring together this community and provide a much needed organization in California.
CCPKUAD
Community
Impact
Hosting Events
Our organization focuses on hosting events, which foster building community, inspiring education, and growing compassion and friendships for people in the PKU and allied disorders family.
Advocacy and Awareness
We are dedicated to advocating for the needs of individuals with PKU and raising awareness about the impact of the condition. By engaging with policymakers, healthcare professionals, and the public, we strive to promote understanding and support for all people within the PKU and allied disorder community.
Research and Innovation
We engage with companies and organizations advancing research and directing innovation in the metabolic disorder space. By supporting scientific endeavors and promoting collaboration among researchers, we aim to drive progress towards improved treatments and potential cures for PKU and allied disorders.
If you, or a friend or loved one, are having problems with obtaining coverage, medical food products or any other matters related to your medical treatment, join our group to become advocates.
We coordinate with the National PKU Alliance and are active in providing support for current medical issues regarding coverage. There is power in numbers! Parents, families and friends provide a huge voice!
Help your friends understand PKU and the importance of medical food coverage. Read this article and share.
Education and Resources
We strive to provide educational resources to members of our community by collaborating with research institutions, clinics, and companies within California and nationwide.
Collaborative Partnerships
We actively seek partnerships with organizations, institutions, and industry stakeholders to amplify the impact of our efforts. Through collaboration, we aim to expand our community outreach and drive positive change for families and individuals affected by PKU and allied disorders.
Supportive Community
We strive to cultivate a supportive and inclusive community for individuals and families impacted by PKU. Our events are designed to foster connections, providing community support, and create access for individuals and institutions navigating the challenges associated with metabolic disorders.
- Family DaySat, Jul 26Atascadero Lake Park
