Home » Rare diseases » My Rare Life: Rare disease patients call for change

We asked people living with rare diseases in Europe about the biggest challenges they face and what they think needs to change. Hear their perspectives by watching our video.

There are 30 million people living with a Rare Disease in Europe.1 That’s 30 million rising to the challenge of living life with a rare disease, day in, day out. The My Rare Life campaign, which is being funded and organised by BioMarin, has gathered submissions from people living with a rare disease from across Europe to better understand these daily challenges, and to highlight where change is most needed.

To mark Rare Disease Day 2021, we’ve created a film to share the rare lives of people from Italy, Spain, Poland, Portugal, Turkey, the UK and more. Watch our campaign film to hear directly from patients about what they think most needs to change.

We would like policymakers and decision makers from Europe, the Middle East and Africa to watch our film to better understand the impact rare diseases can have. You can help us to reach them by sharing this video on social media and tagging relevant decision makers from your country. Use the hashtags #MyRareLife and #RareDiseaseDay to join our campaign.

Watch our full video here. Help us to call for change by sharing this on social media and tagging decision makers in your country. Don’t forget to use the hashtags #MyRareLife and #RareDiseaseDay.

1Europa. Orphan designation: Overview. Available at: https://www.ema.europa.eu/en/human-regulatory/overview/orphan-designation-overview#:~:text=About%2030%20million%20people%20living,medicines’%20in%20the%20medical%20world. Accessed 19th February 2021.

February 2021

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