Jansens Foundation

The miission of the Jansens Foundation is to bring awareness and support research in hope fo bringing about a cure to this debilitating skeletal condition. Jansen’s Disease is an ultra-rare condition, affecting fewer than 30 patients worldwide, which often results in limited diagnosis and treatment options.

Patient awareness: Develop and maintain website with information about the condition for people across the world to access. Patients and medical personnel from across the world (about 40 or more persons) can access contact information to seek out additional information regarding medical diagnosis, testing, and treatment. Maintain the foundations operation to meet the above objectives as well as objectives described below through independent contractors serving as Project Lead (2) and Administrative Official.

Empower the Jansens community and stakeholders by enhancing their capacity to define research priorities and engage in the CER process through training. By creating a structured framework for collaboration, we aim to establish best practices for involving ultra-rare patients, caregivers, and relevant community members (19 individuals) ultimately improving long-term outcomes in research and healthcare. Stipends awarded for completion of CER trainings.

Jansens Foundation is a 501(c)(3) nonprofit (EIN 81-5444211) based in Elkhorn, NE.