Welcome

STANDBEIN e.V. was founded in August 2007. It is a non-profit-making self-help support group for people afflicted with hemimelia (PFFD, fibular hemimelia, tibial hemimelia).

These congenital complex deformities are very rare and the cause is still unknown. In Germany 5 -10 children per year are born with this anomaly.

Therefore not only parents but also obstetricians, pediatricians and orthopedics hardly see this kind of abnormality in their life. There are only a few highly specialized centers that are well-versed with the diagnosis and therapy.

After the birth of such a child, parents are often left alone not only with the fact that their child has an abnormality but also with all their queries and questions. Parents have feelings of guilt and have no answers to the question as to „why“ all this happened and it gives way to dispair. Even though one can search through the web it is still hard to find serious medical information, therapies and prospects for the future.

It is a long-life responsibility to look after a child. Surgical procedures and therapies last through childhood. During this period of time one is confronted with a great deal of concern and doubts.

But these parents are not alone.

What are our goals?

  • to provide impartial medical information
  • helping you to find appropriate medical professionals and available treatments
  • to provide support to those who are afflicted and their families (by easing the burden of treatment, facilitating activities of daily living)
  • to give you the opportunity to share experiences with others who have the same condition
  • to assist you in matters regarding social legislation (e.g. severely disabled ID card or insurance benefits)
  • to enhance cooperation with health professionals and hospitals and therefore improve educational programming
  • to support research projects to find the cause of the disease and improve therapeutic approaches
  • to promote public awareness

What can you do?

Become a member of STANDBEIN e.V.!

Knowing how other people cope with hemimelia can be comforting. Use the opportunity to share your knowledge and personal experience with others in order to help them.

Or become a sponsoring member and help us with a donation.

You can become a member after the age of 12. An application form is found here or contact us at our postal address.

We look forward to hearing from you!