Pku Board

Hi,

for the E.S.PKU Conference 2009 in Antalya (Turkey) we are planning to have a session on "BH4 - patient experiences". For this session we are still looking for an (european) PKU adult who would like to share his/her BH4 experiences with us.
There will also be a mum of a PKU child talking about her (or her childs) experiences with BH4 -but we would like to have a second experience-report.

Do you have experiences with BH4 or do you know a PKU adult who is (or was) on BH4?
If yes, please contact me. Thanks

Greets,
Dinah
(Vice President E.S.PKU)

Hi,

thanks for your post. Of course I can tell you a little more about the E.S.PKU Conference 2009 in Antalya (see the details below).

May I ask you some questions?
After reading your post, I was wondering why your daughter has not been diagnosed earlier...? I think usually the newborn screening is done only a few days after birth....-is this different in Turkey? How come it took 33 days until you got the first diagnose?
How is the situation for PKUs in Turkey? Do you have PKU associations for families and patients? -I am be very interested to learn more about the situation for PKUs in Turkey.

Best regards,
Dinah



The E.S.PKU Conference will be from 30th October until 1st November 2009 in Belek/Antalya.
The conference is dedicated to patients and families. Specific workshops are offered as well as presentations and discussions on late- and untreated PKU and first patients experiences with BH4. Children can gather information on PKU in a workshop with young adult patients. Activities will make the conference unforgettable to them. For Professionals the conference offers the opportunity to exchange latest experiences in several workshops and presentations. Delegates and representatives of the E.S.PKU member associations will discuss the actual situation regarding e.g. European health politics and European networks. The Industrial Exhibition will give insights in latest product developments. Conference dinner and social Program complete the conference.


The hotel is located directly to the beach of the Turkish Riviera, about 27 km away from Antalya airport and 37 km from Antalya city. The family hotel offers bars and 3 restaurants, TV-room, mini- and teenclub, shops, hairdresser, Turkish Spa, pools and further facilities such as tenniscourts, Miniglof, Fitnesscenter etc.The rooms are equipped with bathroom or shower / WC, air-conditioning, Sat-TV, phone and minibar.