The reality of daily living for most people living with a rare disease and their family members or caregivers may include any combination of providing and receiving medicines, going to appointments, participating in physical therapy, using special equipment, various social and community support services and reach maintenance. Managing the tasks associated with this care can be challenging, as well as the usual daily activities, such as work, school and the time allocated to them.
There are more than 6000 rare diseases affecting more than 300 million people worldwide. Each disease has an impact on daily life, including the need for a daily care routine. According to Rare Barometer (a research program designed to systematically collect patient views and involve patients in policymaking and decision-making) on balancing everyday life and care with a rare disease, and 8 out of 10 patients difficulty in completing. As a result, the majority of care is often regulated by people living with a rare disease and their families who spend a significant amount of time organizing care. According to the study, 70% of patients and caregivers describe this as time-consuming.
Organizing care; researching local services, making phone calls, reaching treatment and rehabilitation, dealing with administrative procedures, arranging the home and workspace. As a result, people living with a rare disease are often separated from work and school. The process becomes complicated and frustrating, especially when there is a lack of coordination between services, which means having to repeat the same information over and over. Communication between different services needs to be improved in order to provide services efficiently to meet the needs of patients.
2019 Rare Diseases Day
XII. The Rare Diseases Day will focus on bridging the gaps in the coordination of medical, social and support services to overcome the challenges that people and their families living with a rare disease worldwide face every day. 2019 Rare Diseases Day is an opportunity for people living with a rare disease to be part of a global call to care services, policymakers and health professionals, to better coordinate all components of care.
Show You're Rare
The theme bridging health and social services will guide patient organizations and all Rare Disease Day participants worldwide to advocate for the 2019 Rare Disease Day.
In addition, the #ShowYourRare #NadirliginiGoster social media campaign continues in 2019 due to its success in 2018. People all over the world will paint their faces to show their rarity for Rare Diseases Day. Join!