Rare Disease Day will be celebrated on 28 February 2019. Its aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Go to the Rare Disease Day website to find out more about:
In 2019 the theme for Rare Disease Day is Bridging health and social care.
There are over 6,000 rare diseases that affect over 300 million people worldwide. Each disease has an impact on everyday life, and involves a complex care routine with multiple services.
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 result, people who have a rare disease often have to take time off work or school. It can become 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.
Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.