The PKU Life Romania Association was founded in October 2005 with 11 members and now has 39 members. The association aims to ensure screening, diagnosis, and treatment for phenylketonuria (PKU) patients in Romania. According to statistics, there are approximately 900 people in Romania affected by PKU, but only 180 have been diagnosed, and treatment options are limited. The association advocates for improved and expanded screening, access to specialized dietary foods, counseling support, and medical care for both children and adults living with PKU in Romania.

1. PKU LIFE ROMANIA
Association
The association of the people with
Phenylketonuria from Romania

2. The PKU Life Romania Association
had been funded in October 2005,
with 11 members in it, and now it
counts 39 members.

3. The targets of our association are:
1.Taking steps to the Ministry of Health
for – the generalize of the screening
- the assurance of treatment for
the diagnosed children
- the assurance of treatment and
medical assistance for the PKU adults

4. 2. The obtaining of the dietetic food
for the PKU patients
3. The parents and the PKU people
counsel

5. The frequency of the disease in Romania is
1 to 7.500 newborns. According to this
frequency, statistically, the number of the
people affected by PKU is 900. The number
of the diagnosed people in the two centers of
diagnose and treatment of PKU –in Cluj and
Bucharest- from 1976 until now, after the
sporadic testing of the newborns in 10 (out of
41) counties is 180.

6. In Romania the screening activity is
resumed to the testing for precocious
diagnosis to Phenylketonuria and
Hypothyroidism of 25 % from newborns.

7. The PKU treatment situation
900 The no. of the
800 affected
700 people,statistic
al
600
The no. of the
500 diagnosed PKU
400 people
300
The no. of the
200
treated PKU
100 people
0

8. The PKU people situation in Bihor
County, where it’s screening since
1976
30 30
25 25
Diagnose
Diagnos d people
20 20
ed
people
15 15
Treated Diagnose
people 10 d people
10
after the
5 age of 1
5
0 0

9. The mental development to the
PKU Life members
40
35
30
25 Total no. of children
and adults
20
Children with normal
15 development
10
5
0

10. In Romania doesn’t exist any PKU
adult with normal psychic development.
The PKU adults aren’t treated in
Romania.
To the diagnosed children isn’t
assured the proteic substitute in enough
quantities – the base of the diet – and the
other dietetic products can’t be found in
Romania.

11. To the request of the association to
the PKU Screening Centre in Cluj, of
monitorizing the PKU children, the
answer was negative – the Screening
Centre in Cluj doesn`t make periodic
tests to verify the Phenilalanine level
from blood to the PKU children.

12. Because of the social dimension of
diagnose and treatment of the
Phenylketonuria, there are necessary
measurements to assure to the PKU
people the right to a normal life.

13. Cooking studio, PKU Centre,
Szeged, Hungary, 2006

15. PKU Life Romania Association –
meeting, Oradea, 2007

16. Cooking studio – Oradea, 2008,
guests: specialists from the PKU
Centre of Szeged, Hungary

18. Cooking studio – Oradea, 2009,
guests: specialists from the PKU
Centre of Budapest, Hungary

19. Cooking studio – Oradea, 2009,
guests: specialists from the PKU
Centre of Budapest, Hungary

20. Thank you!