Mohr Tranebjaerg

The Mohr Tranebjaerg Syndrome self-help initiative is a community-led information and support resource created by parents in Germany, Ireland, and the United Kingdom. Its goal is to gather and share information about this extremely rare condition, raise awareness, and encourage connection among affected people, families, organizations, and other supporters. The site notes that prevalence is unknown and that around 90 cases have been identified worldwide.

Visitors can explore information about Mohr Tranebjaerg Syndrome and the TIMM8A gene, as well as sections on research, vitamins, and related resources. The initiative also provides a register, with options to view or update entries, information about where people live, and a link list. For peer support and updates, it offers a moderated WhatsApp channel for parents, affected individuals, and relatives; new members are approved manually. The site is being developed and updated over time, and welcomes contributions such as relevant information, personal experiences, and materials through its contact form. Its purpose is to help families connect, share knowledge, and find support.