Together united to achieve greater equity – Rare Disease Day!

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

With about 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.¹

The rare disease community and the rare cancer community 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 each year.² This means that 1 in 5 people diagnosed with cancer has a rare type.^² There are over 200 types of rare cancers.³

Worldwide, over 570,000 people are diagnosed with bladder cancer every year.⁴ Rare forms of bladder cancer account for 3% to 5% of all bladder cancer diagnoses.⁵

Rare bladder cancer patients and their families share the same burden and face similar challenges created by the rarity of their conditions:

• A long and difficult journey to diagnosis,
• A lack of or disrupted access to appropriate health/ social care and medicines,
• A lack of doctors with relevant expertise in their country,
• Few available treatments, among many other challenges.

Since 2008, Rare Disease Day, which takes place on the last day of February, has brought together patients, caregivers, family members, friends, and advocates from around the world. 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.

We are all urged to come together as one. We invite you to participate in raising awareness and taking action today for this vulnerable population that requires immediate and urgent attention. Like and share our #RareDiseaseDay posts across our social media channels and show your support.

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

1: Rare Disease Day. What is Rare Disease Day? 2022. Accessed on: 18 February 2022. Available at: Rarediseaseday.org/what-is-rare-disease-day/

2: Cancer Research UK. What is a rare cancer? 2019. Accessed on: 18 February 2022. Available at: cancerresearchuk.org/about-cancer/rare-cancers/what-rare-cancers-are

3: EURORDIS. The Voice of Rare Disease Patients in Europe. 2021. Accessed on: 18 February 2022. Available at: eurordis.org/content/rare-cancers

4: World Bladder Cancer Patient Coalition. Bladder cancer 10th most commonly diagnosed worldwide. 2020. Accessed on: 18 February 2020. Available at: worldbladdercancer.org/news_events/globocan-2020-bladder-cancer-10th-most-commonly-diagnosed-worldwide/

5: Bladder Cancer Net. Rare Bladder Cancer Diagnosis: What Does It Mean?. 2017. Accessed on: 18 February 2020. Available at: bladdercancer.net/living/rare-diagnosis