Leave no one behind – UN resolution for families living with a rare disease

Flaminia Macchia

Executive Director, Rare Diseases International 

The global community of persons living with a rare disease (PLWRD) is making an urgent and direct appeal to the United Nations (UN) in 2021. 

We are calling on all 193 states of the UN General Assembly to adopt a resolution that addresses the complex challenges faced by families living with a rare disease. Collectively rare diseases are not rare. Their impact is felt by over 300 million people worldwide, as well as their families and society at large.

Calling for equity

There are over 6,000 identified rare diseases. The diversity and rarity of each condition leads to limited knowledge and expertise in rare diseases. As a result, PLWRD are often neglected and remain invisible to many health and social systems. 

A lack of public awareness also means that this vulnerable community faces a greater risk of discrimination, isolation and exclusion. 

Collectively rare diseases are not rare. Their impact is felt by over 300 million people worldwide.

Leave no one behind

The United Nations is committed to leaving no one behind and promoting inclusive societies. This mission is expressed through the Sustainable Development Goals (SDG) and has been brought to the forefront by the COVID-19 pandemic, which disproportionally affects vulnerable populations, including PLWRD and continues to widen existing inequalities. 

The challenges of the rare disease community are closely linked to key pillars of the SDGs. Children living with a rare disease face difficult inclusion and integration into education systems that are often ill-adapted to their needs. Families may struggle to access decent work and have to deal with additional expenses associated with care for rare diseases. This leads to increased impoverishment of the whole family.

Women and mothers are often primary caregivers and experience greater stigmatisation and discrimination. The whole rare disease community surmounts hurdles that limit participation and inclusion in society. 

To keep the promise to ‘leave no one behind’, we are asking every country to adopt the UN Resolution on addressing the challenges of persons living with a rare disease and their families. 

Rare Diseases International is the global alliance bringing together patient groups active in over 100 countries, including regional organisations for Europe, Latin America and Asia Pacific. We work to promote greater visibility, inclusion and equity for all PLWRD and their families. 

Join the call 

RDI together with EURORDIS-Rare Diseases Europe and the NGO Committee for Rare Diseases have developed the #Resolution4Rare toolkit which provides letter templates, videos and social media posts. We encourage everyone to join the call for a UN resolution by posting on social media and reaching out to their local and national authorities.