A global community demands visibility for people with a rare disease

People living with a rare condition experience a kind of invisibility which exacerbates inequity, discrimination and injustice. Imagine a community of over 300 million people fighting to be seen.

On Rare Disease Day 2023, Rare Diseases

Durhane Wong-Rieger President, RDI Council

International (RDI), a global network of rare disease organisations, has a simple call to action: that the world sees and recognises people living with a rare disease. With this goal in mind, on 28 February 2023, the network will host a virtual event organised in partnership with the Rare Disease Day campaign to spotlight rare disease groups around the world and help raise awareness among the public, policymakers and healthcare systems.

Recognition is a matter of life and death

In many countries, rare diseases are virtually invisible to healthcare systems and providers. Primary care clinicians are regularly unable to identify and effectively treat conditions to which they may have limited exposure. The result is a delayed diagnosis, misdiagnosis and inappropriate treatment or clinical management leading to disease progression with life-threatening consequences. The majority of rare diseases do not have an effective treatment as research into conditions that affect fewer people is not prioritised, and companies find financial incentives insufficient to drive the development of therapies. Where treatments are available, high pricing and unequal access mean that people fail to receive