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 The Rare Diseases International Organization reports that the groundbreaking UN Resolution on Persons Living With a Rare Disease (PLWRD), effective December 16, 2021, was signed by all (193) Member States in the United Nation. Maria Bassols, Spain’s Deputy Representative, presented the proposal to the UN.

The first document recognizing the challenges of PLWRD was signed by all UN members in 2021. The document recognizes the need to protect and promote human rights including those of the three hundred million people and their families worldwide living with a rare disease. There are between 6000 to 7000 identified rare diseases, which are often chronic and life-threatening.

Three UN member states, Qatar, Spain, and Brazil proposed the Resolution which was co-sponsored by fifty-four countries. Robust advocacy by civil society groups played a significant role in the success of the Resolution. The Resolution had a universal appeal and engaged not only UN representatives but also the public with the goal of its adoption during the last quarter of 2021.

Currently, civil society partners are preparing to approach the WHO in an effort to continue the momentum and request a resolution focusing on health and improving systems for PLWRD.

What Constitutes a Rare Disease

The USFDA defines ’rare disease’ as affecting less than 200,000 people in the U.S. In Europe, a disease that affects fewer than one in two thousand people is identified as ‘rare’.

PLWRD faces significant challenges such as:

• Healthcare systems are not aligned with their needs
• Healthcare workers are not sufficiently trained to meet these needs
• The level of knowledge regarding rare diseases is insufficient
• Rare disease education is not sufficiently taken into account by professional organizations or academia

The 2021 Resolution is a type of “soft law” that is binding on the UN secretariat and its programs and budget. As a result, there will be improved integration of all rare diseases in the UN’s priorities and agenda with a view toward universal health coverage.

Addressing the Needs of PLWRD

Focusing on the needs of PLWRD factors beyond health and includes education, reduction of poverty, gender inequality, and so many other issues. The rare disease community is often bypassed by policymakers, society, and health systems.

Many of these issues will be addressed at the 78TH SESSION 12 of the United Nations in 2023.