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Ukrainian-American Birth Defects Program
Neural Tube Defects Conference in the Frame of the World Bank Small Grant Program Project
This conference was the final step of the project titled "Improvement Conditions of Families with Children Disabled Due to NTD (Neural Tube Defects) by Means of Expanding Free Access to Informational Recourses".
To give an estimate of the project in general, I'd like to present here its objectives:
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The conference was held in Kyiv on April 19 and covered the issues of formation NTD parental support group under the Ukrainian Alliance's umbrella (Dr. Ihor Barylyak, President of the Ukrainian Alliance; Andriy Yuryshynets, Head of the NTD Parental Support Group), presentation of a new information resources related to NTD and formation of the above mentioned parental support group (Dr. Yuri Orlov, Chief Children's Neurosurgeon, parents' guideline presentation; Silvia Serheychikova, producer, "This Child is Mine" video film presentation), overview of current NTD situation in Ukraine (Dr. Natalia Zymak-Zakutnya, Khmelnytsky UABDP Center), and NTD prevention through folic acid fortification (Dr. Olena Trush, UABDP Consultant).
 Drs. I. Barylyak (right) and N. Zymak (standing left) during the conference |
56 participants from twelve regions of Ukraine took part in the conference:
The additional funding provided by UABDP made possible to invite 14 persons more in addition to planned. Eight persons (five parents, three physicians) accepted the invitation. The UABDP match here comes to 1/3 of the World Bank travel expenses budget.
 From left to right: Drs. V. Honchar (chidren's surgeon), O. Trush, I. Barylyak, O. Radziyevska (Senior Health Specialist, USAID), O. Danilov (Chairman, Chair of Children's Surgery, Kyiv Medical Academy of Postgraduate Education), I. Kharytonova, Yu. Orlov |
The following printed materials (each set consists of 14 pages, two of them are full color-printer flyers) have been distributed as the handouts during the conference:
80 sets of the printed materials were distributed during the conference. All expenses related to printing have been covered by the UABDP.
480 copies of the "Spina Bifida" guidelines for parents (the illustrated brochure, 100 pages) were distributed during the conference. They were handled to every NTD Parental Support Group member and all UABDP OMNI-Centers. The participants, who were the representatives of the medical institutions that provide care for children with spina bifida, received the copies for further distribution at the regions. Parents from the regions not represented at the conference will get the copy of the guidelines by mail or during the next visit of their medical care provider personally. In this way, we plan to provide every family who has child with spina bifida in Ukraine with the copy of "Spina Bifida" guidelines for parents. Because a lot of children with spina bifida live in special orphanages, we plan to provide these institutions with the "Spina Bifida" brochure as well.
 Dr. Yu. Orlov, Chief Children's Neurosurgeon of the Ministry of Health of Ukraine, presenting the "Spina Bifida" guidelines for parents |
40 copies of the "This Child is Mine" video film were distributed among the regional medical genetic departments, UABDP OMNI-Centers, Chairs of the Academy of Medical Postgraduate Education institutions, and members of the NTD Parental Support Group during the conference. Each participant of the film received a copy as well. The rest of the copies is planned to use for promotion of the Ukrainian Alliance activities, NTD prevention in particular.
The conference reached its goals. The contacts established during the conference should be kept up on a regular base. The NTD Group members should be involved in creating newsletters and other information with their further delivery through mailing list. The NTD Group members should be involved in folic acid fortification promotion or folic acid campaign at all levels.
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17/July/2003 sl
