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Spring Survey 2012

Introduction

Program: What is Quality PKU Care Today? And How Do You Get It for You or a Loved One?

Table of Contents

  1. Introduction LISTEN
  2. Julie's Story LISTEN
  3. Managing PKU as an Adult LISTEN
  4. Signs and Symptoms of Poor Phe Management LISTEN
  5. Social and Relationship Challenges for Patients with PKU LISTEN
  6. Finding Quality Care LISTEN
  7. Preparing your Teen to Manage Their Care LISTEN
  8. Individualized Care to Manage Diet and Medications LISTEN
  9. Questions from Listeners LISTEN
  10. Closing Comments LISTEN

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Andrew Schorr:

You're going to hear all about how to get quality PKU care today and how do you get it for you or a loved one. It's all part of our special series on PKU, which kicks off right now on Patient Power.

Hello and thank you for joining us once again for our in-depth program on PKU. I'm Andrew Schorr broadcasting live from Seattle for Patient Power, and I am happy that we are now launching a new series of six live programs. You can listen on the phone or on the Internet. You can catch it later, read the transcript, all to give you and your family the latest most in-depth information on PKU. I'm always delighted, I have a wonderful group of guests who can help us, and we invite your questions as this is a live program.

Let's talk about this whole series we're beginning today. We're going to talk between now and August about six very important topics. Tonight we're going to talk about what is quality PKU care today, up to the minute, and how do you get it for you or a loved one.

On April 30th we're going to discuss how do you pay for quality PKU care today and what resources are available, and there are resources available, and we will help you connect with them should you need it.

In mid-May, May 19th, we're going to discuss how does PKU affect you and your relationships whether it's a little child and birthday parties and friendships or if you're a teenager or have a teenager or if you're an adult. So we're going to look at it from all the different angles of life.

In June we're going to discuss what are the dangers of not treating PKU effectively. What are the right Phe levels for you or your loved ones?

In July we're going to discuss how confident can you be with your PKU treatment plan making sure that you're on the right plan for now and as you go through life or for your child, and then in August we'll have our sixth program and we'll discuss how can you be a powerful PKU patient and advocate for yourself or a loved one.

Great topics. We always want your input and your suggestions. Just send us an e-mail to PKU@patientpower.info.

Just a couple of other comments before we begin. Thanks to BioMarin for an unrestricted educational grant that allows us to do these programs but be sure that Patient Power is solely responsible for the content, and it is a talk-show and whatever we discuss we discuss. We don't go by any prepared script, but we have wonderful guests that help us explore this topic.

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