TruePKU Live Stream

Phone-in Live

Want to talk to us live during the discussion sessions?
Please call 1 703-844-3231 when prompted.
*Due to time restrictions, we may not be able to get to all phone calls.

Submit a Written Comment

Submit a comment below on the topics we will be discussing in advance of the EL-PFDD meeting. Comments should be submitted individually.

The comments collected may be shared during the True PKU EL-PFDD and may also be used in the final Voice of the Patient report (with identifying information removed).

Topic 1 – Living with PKU – Symptoms and Daily Impacts

What are the symptoms of PKU that affect you (or your loved one) the most and how do they impact your daily life?

What does a bad day look like for you (or your loved one)?

What does a good day look like for you (or your loved one)?

Topic 2 – Current PKU Treatment & Management Approaches

What are you currently doing to help manage your condition or its symptoms? How do you manage your (or your loved one’s) PKU and how well does that management approach work for you?

How do you track your Phe/protein intake and monitor your blood Phe level?

Topic 3 – Future Treatments, Monitoring, Treatment Aspirations & Clinical Trials

Short of a complete cure, what specific things would you look for in an ideal PKU treatment? Short of a complete cure, what would you like to see in an ideal treatment for PKU?

What challenges do you face in considering or participating in a clinical trial for PKU?