INNOVCare addresses the serious unmet social needs of people living with a rare disease and their families, which affect their dignity, autonomy and their fundamental human rights expressed in the Universal Declaration of Human Rights and in the United Nations Convention on the Rights of Persons with Disabilities.
of people living with a rare disease have to visit different health, social and local support services in a short space of time*
of people living with a rare disease and carers say that different services communicate badly between them*
of carers for people living with a rare disease spend more than 6h per day on health-related tasks*
of patients and carers were absent from work due to health-related issues for over 30 days in the last 12 months*
Why develop an innovative holistic care pathway for rare complex conditions?
- People with a rare complex disease often need multidisciplinary medical, social and local care.
- Knowledge on rare diseases and their consequences can be scarce and difficult to access.
- Service-providers within a range of sectors frequently lack knowledge on rare diseases and are commonly reluctant to get involved in situations that involve diagnoses that are unfamiliar.
- Rare diseases often do not have a satisfactory treatment or any treatment at all.
- Rare diseases can cause severe impairments and a high percentage of people living with a rare disease are affected by motor or intellectual impairments, which can occur simultaneously.
- The social challenges faced by people living with a rare disease and their families include, for example, the necessity to reduce or stop professional activity and the need to relocate to a home better adapted to their health needs.
- Patients and families also face challenges regarding domestic tasks, transport and mobility, leisure, educational and professional activities, self-care, financial instability and employment discrimination.
As a result, the need for integrated care provision is crucial to alleviate the impact that a rare disease has on the daily life of the people living with a rare disease and their family.