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Bundesverband zur Begleitung von Familien vorgeburtlich erkrankter Kinder e.V. (BFVEK)

We support families throughout Germany whose children are diagnosed with a serious illness during pregnancy (e.g. heart defects, spina bifida / open back, lung problems, kidney defects...) on their personal path. We refer people to special centres for prenatal diseases, refer them to other affected families who are already one or two steps further along the way, as part of our sponsorship programme. We offer further projects such as an encouragement package, grief counselling, a specialist library, books for siblings and children, healthy nutrition in hospital, resilience training etc., all of which are completely free of charge for those affected.

About Bundesverband zur Begleitung von Familien vorgeburtlich erkrankter Kinder e.V. (BFVEK)

Target group(s)

Families who discover during pregnancy that their child is not healthy.

Founding year

2017

Paid staff

0

Funding

We finance ourselves purely through donations, grants and membership fees.

Objectives

The promotion of social contacts between those affected and their families and their care and support - ideally personally and locally. Together we are strong, we learn from each other and support each other.

The recommendation of affected pregnant women to specialised centres for diagnosis, competent counselling and therapy of prenatal diseases. Rapid and comprehensive diagnoses should only be made by experts at level DEGUM III and the evaluation of the examination results by several doctors.

The demand for comprehensive, non-directive education following the diagnosis of a prenatal disease of her child (about the type of disease, prognosis, postnatal and prenatal treatment measures, including possible experimental treatment options, palliative postnatal care as well as the possibility of abortion, etc.)

Parents should be informed about all options without prejudice or pressure, so that they can decide for themselves what the right solution is for them. The promotion of measures to improve the well-being of long-term hospitated pregnant women (e.g. adequate accommodation in the clinics, balanced nutrition, psychological care, physiotherapy, WLAN access). Especially in difficult situations, the mother's health is important and has a positive effect on the child's well-being.

The promotion of the establishment of adequate accommodation close to the clinic for affected pregnant women and their relatives. Often, special centres are not located at the place of residence of the affected woman, and accommodation in the clinics is often overloaded.

The demand for adequate pain therapy for mother and unborn child during prenatal interventions. Operations are sometimes not performed under anaesthesia and are therefore unnecessarily painful, which can lead to trauma in repeated operations.

The demand for the observance of adequate hygiene measures during prenatal operations. These are operations that must be performed in the sterile surroundings of an operating theatre and - for example - not in a highly frequented treatment room.

To inform and educate the public as well as the legally and politically responsible authorities at federal level about the special problems of diseases of an unborn child that occur already in the womb and their effects on the pregnant woman.

Transparency for and openness towards those affected are basic prerequisites for creating better conditions.

The nationwide implementation of fundraising campaigns as well as other measures to be able to financially support the aims of the BFVEK. As a non-profit association of affected families and supporters, we are dependent on financial support through donations.

Support for research into the development of certain diseases and - if possible - the development of treatment measures against these diseases. Medical progress helps to save lives. The idealistic, political and financial support for the establishment of a chair for antenatal therapy and surgery. The more doctors can carry out appropriate prenatal treatments, the more lives can be changed or saved for the better. An adequate training centre must be created for this purpose.

To cooperate with other organisations that pursue the same goals at national and international level. Doctors and patients benefit from cross-border personal and medical exchange.

The establishment of a nationwide network as well as a range of events and further training courses.

The level of awareness of prenatal diseases should be increased so that doctors can provide adequate information, take action and give those affected as much information as possible about their situation.

Your support helps

... Save children's lives by helping to refer them to specialized centers through us.


Bundesverband zur Begleitung von Familien vorgeburtlich erkrankter Kinder e.V. (BFVEK)