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Ukrainian Organization of Parents of PKU-affected Children 2001 Plan

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I. Kharytonova, M.D.
Ukrainian-American Birth Defects Program Liaison


On September 22, the first joint meeting of the members and advocates of the Ukrainian Organization of Parents of PKU-affected Children* was held in Kyiv. It took place at the National University "Kyiv-Mohyla Academy" under the support of the Ukrainian-American Birth Defects Program and the Ukrainian Alliance for the Prevention of Birth Defects.

The first workshop of the Ukrainian PKU parental organization
The first workshop of the Ukrainian PKU
parental organization.

58 persons, representatives of parental, non-for-profit organizations, state health care administration, plants for manufacturing PKU diet formulas from 18 (eighteen) regions of Ukraine, and medical care providers met together to define the directions and work out the strategies of further activities of the Organization for the period after its incorporation; promote measures to diminish such negative heritage of PKU as mental retardation; discuss how to disseminate knowledge on PKU diet management among medical professionals and parents; and improve the situation with early PKU diagnosing and maternal PKU prevention.

The approach to work out the appropriate legislative base that will guarantee social protection of PKU-affected children and their families was undertaken as well.

The issue of disseminating knowledge regarding birth defects prevention in partnership with the Ukrainian Alliance for the Prevention of Birth Defects, parental support groups, and non-government organizations was among the priority topics of this meeting.

The workshop presidium
The workshop presidium.
 
 
One of the parents sharing her own experience of diet feeding
One of the parents sharing her own experience
of diet feeding.

* The idea of creation of the Ukrainian organization of parents of PKU-affected children got an encouragement and support from Dr. Wladimir Wertelecki, Director of the Ukrainian-American Birth Defects Program. The Organization has been registered on April 19, 2001 (the certificate of the Ministry of Justice of Ukraine #1619). To have a look at the history of creation of the PKU Parental Organizations, please visit the site "Meeting of Parents of Children with PKU" (1999).

 
IBIS:International Birth Defects Information Systems

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Sponsor: I.B.I.S. | Site Concept: W. W., S. L | Page Content: I.Kharytonova
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24/July/2002 AT