Uniquely Anna

potentially lifesaving therapies and care. This is especially true for communities in low and middle-income countries.

Rare disease invisibility is social injustice

In the absence of disaggregated data, the social determinants of health — including work, gender, access to social services and education — are often left out of policies on rare diseases. For example, issues such as isolation and stigma, access to occupational opportunities and the heavy cost of rare diseases on families are often excluded from social support initiatives. Policymakers wrongly conclude that other frameworks, such as broader health and disability policies, sufficiently cover people living with a rare disease. However, rare conditions require specific attention, which focuses on the complexities presented by rarity.

A global shift for rare disease communities

There are positive signs that this previously unseen community is gaining visibility. As many countries do not have a definition of what constitutes a rare disease, RDI, working with the World Health Organization (WHO), has developed an international description of rare diseases to help inform policymakers worldwide.

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