Together united to achieve greater equity on Rare Disease Day!

Since 2008, Rare Disease Day, which takes place on the last day of February, has brought together patients, caregivers, family members, friends, and advocates worldwide. This leap year it is truly rare disease – February 29. The World Bladder Cancer Patient Coalition supports the Rare Disease Day international campaign that aims at increasing awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.

To help spread the message, we have created social media resources for you to share with your network. We hope that this will help bring awareness to the challenges that patients with rare types of bladder cancer experience worldwide.

With approximately 300 million people living with a rare disease, there is an urgent need to expand research, increase levels of care, approve new therapeutics, and provide access for every patient who wants or needs treatment.

The rare disease and cancer communities are sometimes regarded as two different worlds. However, this is far from reality. Rare cancers are rare occurrences of a common disease affecting 22 out of every 100 cancers diagnosed yearly. This means that 1 in 5 people diagnosed with cancer has a rare type. There are over 200 types of rare cancers. Worldwide, over 614,000 people are diagnosed with bladder cancer every year. Rare forms of bladder cancer account for 3% to 5% of all diagnoses.

Due to the low prevalence of rare diseases, it is fundamental to engage with the community and elevate patients’ stories to expand research, increase levels of care, approve new therapeutics, and provide access for every patient who needs treatment.

We invite you to raise awareness and take action today for this vulnerable population that requires immediate and urgent attention. Download our social media resources, and do not forget to tag us on social media!

To learn more or get involved, please visit the Rare Disease Day website.