Theme 2019

Rare Disease Day 2019 theme announced: Bridging health and social care

The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

There are over 6,000 rare diseases that affect over 300 million people worldwide. Each disease has an impact on everyday life, including the need for a daily care routine. According to the first ever Europe-wide survey on juggling care and daily life with a rare disease carried out by Rare Barometer, 8 in 10 patients have difficulties completing basic daily tasks. As a result, the majority of care is usually coordinated by people living with a rare disease and their family members who spend a significant amount of time organising care. According to the survey 70% of patients and carers describe it as time consuming.

Organising care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. As a consequence, people living with a rare disease are often off work or school. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet patients’ best interests.