EIVE - Developing innovative health care concepts for rare diseases

The aim of this multi-partner project funded by the German Federal Ministry of Education and Research is developing innovative health care concepts for the management of rare diseases.

People with rare diseases often need assistive technology devices, which can be costly and require substantial customization. An insurer’s refusal to cover an expensive device can leave patients facing financial difficulties and restrict their ability to participate in the normal activities of daily life.Instead of a uniform system for financing and reimbursing assistive technology, Germany has a patchwork of contracts and agreements between insurers and providers, both at the federal and state levels.

• To analyse problems in the financing and reimbursement of assistive technology devices that are used in the management of rare diseases.
• To describe ways to improve the current situation.

I. Data from published and grey literature will be used to analyse payment flows and supply chain activities between the various actors involved in the production and provision of assistive technology devices. The focus will be on the following rare diseases:

•   Marfan syndrome
•   Epidermolysis bullosa
•   Amyotrophic lateral sclerosis (ALS) and Duchenne muscular dystrophy
•   Wilson’s disease
•   NBIA (Neurodegeneration with brain iron accumulation)