STANDBEIN e.V. was founded in August of 2007. It is a non-profit support group for people affected by PFFD, fibular or tibial hemimelia, and their relatives.

These complex congenital deformities are very rare and their cause remains unknown. In Germany only 5-10 children are born with such an anomaly every year.

As a consequence, the parents of children affected by these deformities are not the only ones to be faced with this anomaly for the first time; most obstetricians, pediatricians and orthopedics never see a hemimelia case during their career. Only a few highly specialized treatment centers are experienced in the diagnosis and therapy for these deformities.

When a child suffering from hemimelia is born, the parents are often left alone with their questions and concerns, on top of having to deal with the hard facts. Many despair trying to cope with the guilt and searching for an answer to how this could have happened. Even in this digital age it is not easy to find solid information on the medical facts, available therapies and prospects for the future.

Caring for a child is a life-long commitment. Treatment involving surgery takes a long time, encompassing the child’s growth years or even beyond. Parents will be faced with new concerns and questions as they delve deeper into the subject and as therapy progresses.

But these parents are not alone.

What are our goals?

  • Provide unbiased information on medical aspects
  • Help you find qualified medical professionals to ensure your child receives the best possible treatment and therapy
  • Support the affected persons and their relatives when coping with the deformity, implementing therapies and dealing with every-day life
  • Offer an opportunity to share experiences with other affected children and their parents in different treatment stages
  • Assist you in matters regarding social care and legislation (e.g. disability identification card or insurance benefits)
  • Collaboration with health professionals and hospitals to collect and disseminate information
  • Fund research projects on the etiology (causes) of the deformities and improve therapy options
  • 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 have to be at least 12 years old to become a member. The membership application form can be found here or contact us at our postal address.

We look forward to hearing from you!