Retina International Welcomes WHA Resolution on Rare Diseases and Calls for Action on Rare Eye Diseases

Retina International (RI) is delighted to share the news that on May 24, the 78^th World Health Assembly adopted a Resolution on Rare Diseases. We thank Rare Diseases International (RDI) for its leadership in bringing together patient representatives from around the world and for ensuring that our voices are heard loud and clear at the global level.

As a founding member of Rare Disease International, and a member of the collation supporting this resolution, RI is proud to build on the adoption of the UN Resolution on the Rights of People Living with a Rare Disease (December 2021) and move forward now, to work on a global Action Plan.

This resolution is especially important to people living with a Rare Eye Disease (RED), who face significant challenges in accessing genetic testing to confirm their diagnosis. The members of RI have consistently asserted that access to a confirmatory diagnosis is a human right. This must be a priority in the development of a Global Action Plan on rare diseases.

RI will keep you updated on the progress of the Global Action Plan, which we expect to be presented at the next WHA in 2027.

It is encouraging that in the current climate of uncertainty, this resolution was prioritised and adopted with such strong support. It also demonstrates that collaboration across borders, and systems is possible, that concrete results can be achieved and positive change can happen when we listen to and learn from each other.

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