As every year, this 28th February Rare Disease Day will be held around the world with the aim of raising global awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. For this reason, Rare Disease Day targets not only the general public but also policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
People affected by a rare disease and their family members or carers usually face with a combination of daily care-related tasks (medical appointments, therapies, respite care...) that may directly impact on the development of their usual daily activities, as working, going to school or enjoying leisure time.
Organising care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. In order to avoid the patients to repeat same information over the time, communication between different services needs to improve, resulting into a more efficient delivery of services while meeting patients' interests.
The 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
There are 8 ways to participate in Rare Disease Day 2019, and one month to go! Discover how to get involved and be part of the movement!!