Rare Disease Day takes place on the last day of February each year, bringing together patients, caregivers, family members, friends, and advocates around the world to raise awareness and improve equity.
Over 300 million people live with a rare disease, and over 200 types of rare cancers exist worldwide. Over 570,000 people are diagnosed with bladder cancer every year. Rare forms of bladder cancer account for 3% to 5% of all bladder cancer 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.
A GLOBAL PRIORITY FOR EQUITY
February is here and rare diseases are in the spotlight! On this Rare Disease Day, let’s unite in green, blue, purple and pink to raise awareness and generate change for everyone living with a rare disease, their families and carers. Join us in the Global Chain of Lights, join events in your community and get your message out on social media with the materials we’ve prepared together with you.
The 30 million people with rare diseases need you, and to quote our Rare Disease Day hero, Helena from Serbia: “Let’s ensure they have help to solve the problems they face and someone to listen to them and advise them.”
Highlight of the week: On the 28 February, marking Rare Disease Day, a high-level conference will take place in accord with the EU Presidency Trio to define the roadmap for rare disease policy and prepare for a European plan for rare diseases!
Everyone can participate in the Global Chain of Lights and Share Your Colours!
In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 28 February 2022.
We have prepared information and instructions for you in the attached document. Print it out or email it to friends!
There is also a film for you to play on your TV or your laptop. Take a look and play it from your window!
You can also download the #lightupforrare video to your computer.
By Sharing Your Colours and shining a beacon from your home, office or your town, you are participating in awareness-raising and showing your solidarity. Collectively, we aim to change and improve the lives of 300 million people worldwide.
Though Rare Disease Day is community-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
Be part of the change this Rare Disease Day!