Persons Living with a Rare Disease (PLWRD) and their families must have an equal opportunity to achieve the highest possible level of physical, mental, and social well-being.
Inequity for PLWRD is driven by multiple causes, foremost of which is a lack of public awareness and medical knowledge, research and expertise.
Consequently, PLWRD and their families experience challenges accessing the right social and health services as well as care, medicines and treatment.
Whilst health inequities and uneven access are experienced by PLWRD across the globe, they are particularly felt in countries with limited resources and competing health priorities.
For the UN and governments to achieve Universal Health Coverage and “leave no one behind”, action to achieve health equity and improve access must give greater attention to the over 300 million PLWRD and their families.
Through global initiatives and collaborations, RDI and its members are helping to advance health equity and access.
Global Initiatives for Health Equity & Access:
- Rare Disease International. Joint Declaration – “Rare Diseases: An International Public Health Priority”
- Rare Disease Day – “Equity Factsheet”
- Wolfram Nothaft, Clifford Goldsmith, Yann Le Cam – “It takes far too long for a rare disease to be diagnosed. Here’s how that can change”. World Economic Forum. 2020
- World Health Organization (WHO) Commission on the Social Determinants of Health, Final Report – “Closing the Gap in a Generation: Health Equity Through Action on the Social Determinants of Health”. 2008