Together united to achieve greater equity on Rare Disease Day!

The World Bladder Cancer Patient Coalition supports the Rare Disease Day international campaign that sheds light on rare diseases and advocates for health equity for all those with a rare disease.

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 year’s campaign revolves around working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse but united in purpose.

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 570,000 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.

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.

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!

We invite you to listen to Bladder Cancer Advocacy Network webinar shinning a light on rare forms of bladder cancer. You will You will hear about what these rare tumours are and what we know about their diagnosis and treatments.

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