THE WILLIAMS SYNDROME ASSOCIATION OF ROMANIA
for the support of persons with Williams Syndrome
The association is set up by parents and wishes to be a support for parents and their children with Williams syndrome. The aspects of the syndrome can be very different from person to person and the not very affected persons CAN be helped to live an almost normal life.
Binding statement
Administered by a team of persons with managerial background, the Association binds itself to ensure a maximum transparency of its activities and of the destination of the raised funds. The administration of the above mentioned funds will be done effectively and efficiently and each sponsor (either person or company) can receive at any moment a full report of the destination / employment of the funds they provided the Association with.
The objectives of the Association:
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Finding the persons affected by this syndrome and not diagnosed so far and providing support for them and their families. This support can consist of information on various topics and through sharing others’ experience, can be of medical nature – providing specialized advice from the doctors collaborating with the Association, of material nature through financing (up to the available amount) of therapy and surgery for those that make the evidence they cannot afford it and last but not least, moral support especially for parents and other persons caring for people with Williams syndrome.
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The information and increased awareness of the medical and educational field with regard to this special condition, its symptoms and the related therapy.
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The sponsorship of training programs for interested physicians through organisation of seminars with specialists from abroad or even the training of Romanian specialists by sending them to clinics/hospitals in countries with more experience when seminars are not an efficient specialisation method. Also, collaborating with the Association is a good opportunity to raise information and practical experience for those preparing PhDs or publishing articles in specialized magazines.
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The sponsorship of research project initiated by medical staff, educational staff or therapists having as their main goal the support of persons with Williams syndrome. |
