Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. The IWSA proudly supports and celebrates Rare Disease Day 2024 on February 29.
Rare Disease Day raises awareness for the 300 million people around the world living with rare diseases.
WAGR syndrome is considered an ultra rare condition with about 500 diagnosed cases worldwide. Wilms tumor is considered a rare disease, as are all pediatric cancers. About 50 percent of individuals born with WAGR syndrome will develop Wilms tumor.
This year, the IWSA is celebrating the accomplishments and achievements of individuals affected by WAGR. These accomplishments provide joy, hope, and promise in a world where WAGR families face uncertainty about the future. The IWSA lifts up each of these individuals and celebrates with them and their families.
A disorder is considered "rare" if it affects fewer than 200,000 people in the US (or 1 in 2,000 people in Europe). WAGR syndrome affects fewer than 500 people worldwide and is considered an "ultra-rare" disorder.
Rare disorders like WAGR syndrome are important because they are key to unlocking the mysteries of more common conditions. For example: People with WAGR syndrome often have obesity caused by a mutation in the BDNF gene. Studying this gene could help lead to new treatments for obesity.
Rare Disease Day is a unique opportunity to share information about WAGR syndrome and how the IWSA supports individuals and families affected by the rare disorder.
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