We're writing to let you know the National PKU Alliance (http://www.npkua.org) is in the process of building a PKU Adult Program. There will be a conference call on January 16th at 7:30 PM Eastern to discuss the activities of the group. PKU adults who would like to be involved are welcome to participate in the call. Topics for discussion include: demonstration of potential software for a website and private social network for adults with PKU, update on a $50,000 grant for clinics to do outreach to adults with PKU, formation of a maternal PKU mentoring program, and how to assist adults with PKU returning to treatment or who are seeking to be more compliant.
The strategic statement of the NPKUA PKU Adult Program is as follows: The PKU Adult Program is a new initiative of the National PKU Alliance (NPKUA) that provides information and support for adults living with PKU. Adults with PKU face many challenges. The program provides a one-stop resource for adults seeking to improve their quality of life. This is the only program composed of a network of adults with PKU, their families, clinicians and industry leaders to address the variety of needs for adults with PKU.
If you would like to receive the call-in information and the agenda, please email us at firstname.lastname@example.org and we will be happy to email you the document as an attachment. If you are interested in being involved but are unable to attend this conference call, please let us know as there will be regular conference calls and opportunities to participate.
Please feel free to contact us if you have any questions.