Ukrainian-American Birth Defects Program

Alliance for the Prevention of Birth Defects was founded in December 1999 in order to build a civil society and help to protect legal, social, economic, creative, age-specific and other joint interests of its members, which are based on an encouragement of birth defects prevention and care of BD children.

Concerts slogan

The society ceases to be indifferent to sufferings of BD children and their families. The best proof is the participants of the Volodymyr Horowitz International Competition of Young Pianists who are our ambassadors of good will in birth defects prevention. The UABDP and the Volodymyr Horowitz International Competition of Young Pianists are long-standing partners. Concerts of the competition participants under the slogan “Harmony in a World Free of Birth Defects” became a tradition not only in Ukraine but also abroad. Thus, in 2003 they became memorable events in the CORTO Hall and UNESCO Residence Hall in Paris, in the UN Residence Hall in Geneva, at the Taras Shevchenko Ukrainian National Opera (Kyiv), in New York, Washington, Atlanta, and Mobile (USA).

Many people all over the world saw such posters

The Alliance follows the policy of partnership and collaboration with other public organizations, charitable funds in Ukraine and outside. Thus, the joint project with the International Women’s Club of Kyiv was aimed to prevent the development of mental retardation in children, affected by phenylketonuria, with the help of rational diet treatment. According to the results of the implementation of the project, 72 children, living in Kyiv and Kyiv region, were provided with special low protein food, produced by the company “Milupa” (Germany).

Another joint project with the Program for Appropriate Technology in Health (PATH, USA) was aimed to prevent recurrent cases of neural tube defects in those women, who already had NTD children. The result of this project implementation was the foundation of a parent spina bifida support group, spreading among parents brochures about NTD prevention and importance of folic acid, publication of the joint PATH/UABDP brochure “Hydrocephaly”, studying the psychosocial needs of women having children with NTD, getting into partner contacts with the Child Neurosurgery Clinic of the Ukrainian Academy of Medical Sciences Neurosurgery Institute.

It was done a great deal of work in order to coordinate energies of organizations of parents, who have children with phenylketonuria, spina bifida, cystic fibrosis, mucopolysaccharidosis, Down syndrome. A new work with the Ukrainian Union of Affected by Hemophilia was set up in partnership with the Ukrainian Academy of Medical Sciences.

Discussion of urgent problems among PKU children parents and physicians

For the first time Ukrainian parental organizations were presented at the World Forum of Medical Geneticists (Vienna, 2001). Vice-President of All-Ukrainian Phenylketonuria Parental Organization Mrs. Olena Sinkevych had an opportunity to take part at the conference of the World Alliance of Organizations for the Prevention of Birth Defects, to know the work of the European Alliance of Patient and Parent Organizations concerning rendering services and introducing innovations in the field of medical genetics, deliver a speech about the activities of the All-Ukrainian Phenylketonuria Parental Organization in one of the conference meetings.

The Alliance introduces into practice a principle: “Having learned yourself, teach others”, when more experienced organizations help new ones to solve the problems of social work and forming new parental support groups. Moreover, the Alliance supports its members’ promotion. Thus, tree heads of public cystic fibrosis organizations from Lviv and Kyiv in 2001 studied at the Social Work School of the National University “Kyiv-Mohyla Academy” taking “Innovations and Supervision in Social Work” module-course. Mrs. Vira Novak’s diploma work “School of Life” for cystic fibrosis children families was highly approved. The Alliance was the partner of this project as to the providing of informational support (Internet and library resources access, rendering of the interpreter services and searching for new contacts).

In September 2002 in Rivne Oblast with the help of the UABDP and the Alliance for the Prevention of Birth Defects it was founded the “Association of Special Needs Children Parents”. Parents, who have children with Down syndrome, make up significant and the most active part of this organization. The example of the activities of this organization shows, how important is active collaboration of a parental organization with medical staff, local authorities and the UABDP OMNI-Center Network.

Namely:

UABDP was a partner of the Rivne Oblast Charity Birth Defects Prevention Foundation “Leleka” in implementation of the project “Legal Support of Disabled Children in Rivne Oblast” under the support of the USA Embassy in Ukraine. Within the bounds of the project it was conducted a set of measures, including 2 round tables, a seminar, an inter-regional scientific-practical conference, and published 2 manuals:

• "Fundamentals of Disabled Children Legal Support".
• "Down Syndrome: Diagnosis, Care, and Prevention".

The Volyn UABDP Center helps the Volyn organization of parents who have children, affected by phenylketonuria, to keep in touch with parental organizations abroad. As a result, in 2002 their children received both humanitarian help (special dietary formulas) and such help as informational resources, books and journals.

Dietary formulas and informational materials sent by parental organizations from State Illinois (USA) for the organization of parents who have children with PKU "Maybutnye" (Lutsk)

Crimean OMNI-center and Medical Genetic Consultation gave regularly professional consultations to children in the Children’s Home “Yalynka”, delivered lectures and reports about congenital and heritable pathology to its staff. On December 9, 2003 the general meeting of the Children’s Home stuff was conducted. It was decided to become a collective member of the Alliance for the Prevention of Birth Defects.

In 2003 in Crimea it was carried out a preparatory work as for the establishment of the association of parents, who have children with chromosomal diseases.

In November 2003 it was conducted a common meeting of heads of the Crimean Branch of the Association of Parents with Cystic Fibrosis Children and specialists of the medical genetic consultation, pulmonology department of the Republican Children’ Hospital, Chair of the Hospital Pediatrics Department of the Crimean Medical University. An initiative group for design of the cystic fibrosis treatment and rehabilitation of patients program was created in Crimea

In Kherson oblast it was established an organization of parents with cystic fibrosis children and the parental organization “Mother’s Heart”, which united parents of children with limited abilities. The OMNI-center gives informational resource and methodical help to these organizations.

Ukrainian Alliance for the Prevention of Birth Defects collaborates with international organizations, whose aim corresponds with the work of the Alliance. In 2003 the Alliance took part in the International Biovision World Science Forum in Lion (France). In October 2003 in Kavtat (Croatia) within the bounds of the 6th International Biotechnical Congress it was conducted the meeting with representatives of the European Genetic Alliance. An initiative group for design of principles and conditions of the East European countries’ and republics’ of the former Soviet Union joining the Genetic Alliance was formed during this meeting. Ukrainian representative also became its member. The Ukrainian Alliance presented its own variant as a positive example of medical stuff and parents collaboration.

The main purpose of the Alliance is a collaboration of organizations of parents, who have children with birth defects, with professionals, an organization of treatment of children with metabolic disorders, determination of prospects of biotechnological industry development in the field of production of medications, determination of priorities in social health of Central and East European countries.

One of the main fields of the Alliance activities is search of funding sources for realization of its own projects. In 2003 the Alliance took part in 3 competitions for financing of the following projects:

During 2002-2003 the Alliance implemented two projects, which were financed by donor organizations:

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8/August/2004 sl