Patient organizations educate people about living with their conditions, raise awareness on screening and prevention, provide emotional support, helplines, and access to treatment. People can meet each other in a forum and share their experiences. This provides on-going support for patients. Patient organizations help shape the current and future healthcare settings by speaking out loud about their needs.
Patient organizations furnish crucial insights for the following:
– Humanitarian help to improve the lack of access in developing countries
– Treatment product safety and supply to ensure that patients get the products they need and learn how to use them safely
– Patient and healthcare development programs with other organizations for faster patient and healthcare development
– Educational resources like survey reports, bulletins, white papers for critical support to the global community
– Investigation and data collection studies for better evidence to manage inherited disorders
– Congress and meetings as overall support functions for the disorder community
The following are the benefits and challenges posed by the coalition of patient organizations:
Sometimes patient organizations may work together and form coalitions. The combined efforts of patient organizations can mitigate complex issues because they are at the forefront in gathering collective intelligence practiced in challenging conditions. Such collaborations also pave the way to better care and lower costs in a new public-private partnership that saves lives, prevents injuries to millions, and improves patient outcomes. These coalitions also save billions of dollars that position countries on the right track towards a more viable healthcare system.