APF Member-Patient Education Meeting

Please join us for an exciting APF Member-Patient Education Meeting for our members on October 5, 2007 in Houston, Texas. This meeting has been made possible through the generosity of one of our APF members.

The agenda will include the following:

After a brief welcome, the first morning session will provide attendees with the opportunity to meet one another and share their personal experiences with porphyria. Our IN TOUCH meetings have illustrated the importance of learning about porphyria from other members and the value of shared dialogue.

During the next sessions, porphyria experts, Dr. Neville Pimstone, Dr. Claus Pierach and Dr. James Kushner, will lecture on each of the porphyrias. In addition to explaining the diseases, the diagnosis and treatment of each type, they will also enlighten us on the present and future research efforts. These physicians are world renowned in the field of porphyria as researchers and clinicians. To prepare for this part of the meeting, you may want to read some of their publications in major medical journals and textbooks.

EPP expert and researcher, Dr. Elisabeth Minder from Zurich , Switzerland will also be making a presentation at the Patient Education Meeting. Dr. Minder will be reporting on their fascinating study results with CUV1647 in EPP. Her patients, she says, are very hopeful with the results.

The experts will also oversee question and answer sessions. You might want to use this interim time before the event to think of all the things you always wanted to know about porphyria and never got a chance to ask. This meeting will provide you with the opportunity to do just that.

In between the educational presentations, the APF will host a luncheon. If you have any special dietary restrictions, please note those when you register.

Desiree will present a short overview of the history of the foundation, its educational and research programs, Global Partners project, the Protect the Future campaign and daily life at the APF .

Since we have little time before the meeting, we will not provide a block of hotel rooms for the meeting. Rather, we have a list of hotels that are near the event and an agent who can help you with your travel arrangements, including placing you in the same hotel as other members, if space allows. That is why it is vital to register and make your travel arrangements as soon as possible. (Ladies, one of our hotels is by the Houston Galleria. So bring your shopping shoes if you choose to stay there.)

Although we are not hosting an evening dinner on October 4th prior to the meeting, we will arrange a dinner meeting for the early responders. This way you can enjoy having dinner with other members and their families.

The Porphyrias are not easy to diagnose, treat and understand. My motto concerning health questions is, "Those who know the most, do the best." This meeting is a challenging and interesting opportunity to Learn the Most and Do the Best. The registration fee is $50.00, a small price to pay for lectures by the world renowned porphyria experts ..... and lunch to boot!

The meeting will be held at the River Oaks Country Club in Houston at 1600 River Oaks Boulevard, beginning at 9 A.M. and ending at 4:00 - 4:30 PM.

If you would like more information on this special event, please contact Elizabeth at the APF, Toll Free: 1-866-APF 3635 or Elizabethapf@aol.com.

For travel arrangements, contact: Maxine Wells-Nelson, 281-376-7167 or maxinewellsnelson@earthlink.net.