Resolution Addressing the Challenges of Persons Living with a Rare Disease and Their Families

On December 16^th 2021, the UN General Assembly adopted the first ever UNGA Resolution ‘Addressing the challenges of persons living with a rare disease and their families.’ This historic milestone was authored by tireless advocacy on the part of the rare disease community. It is a big step towards life-changing policy for people living with rare diseases, including rare psoriatic diseases.

The Resolution

• Recognizes the need to promote human rights of all persons including people living with rare disease worldwide
• Reaffirms the right of every person to attain the highest standard of physical mental health
• Recognizes that rare disease need for equality for all persons living with rare disease including persons unable to take part in daily activities due to physical impact of the disease
• Asserts that all persons with rare disease and their families should have access to social protection and enjoy equal employment that enables them to contribute to the society

While the resolution on rare diseases is a powerful step forward, there are still unmet needs and challenges to be addressed. IFPA continues to call for:

• And end to stigma, discrimination and social exclusion
• Data including income sex, age, race and national context of persons living with rare disease
• Shared resources among advocacy groups on existing information and challenges faced by people living with rare disease

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