We are a voluntary, not-profit association of patients' association of patient relatives and other caregivers whose activities are focused on the joint management of diseases, the diseases, the provision of information about diseases and their treatment options, the representation of interests in health l and socio-political fields, the publication of media for the information and support of patients, with a special focus on supporting research.
The MCT8 Research e.V. emerged from years of collaboration between patient representatives and the MCT8 research community and was officially founded in February 2019. The MCT8 Research e.V. is run on a 100% voluntary basis.
MCT8 Research e.V is the first of its kind and so far only German patient self-help organization; its members are relatives and other ceregivers of MCT8 patients such as therapists and pediatric nurses.
In order to help children with MCT8 deficiency and their families comprehensively, we work on multi-layered projects from different subject areas. The main activities of MCT8 Research e.V. include empower families, educating caregivers about patient rights, supporting MCT8 research, raise awareness of MCT8 deficiency and advocating for faster diagnosis of MCT8 deficiency.
We invite all caregivers to join our Facebook page - facebook.com/groups/mct8research - where we share our information and resources.
Our current tasks are: