Marking Rare Disease Day

Rare Disease Day 2021 fell on 28 February this year and aims to raise awareness among the general public and decision-makers about rare diseases and the impact these conditions have on patients’ lives.

According to Rare Disease UK, one in 17 people will be affected by a rare disease at some point during their lifetime, with 3.5 million people in the UK and 30 million people across Europe living with a rare disease.

In 2021, Rare Disease Day focused on the global rare diseases community by spotlighting six continents, six portraits, six heroes, six lives, featuring individuals living with a different rare disease and facing similar challenges.

Also marking Rare Disease Day 2021, biotech company bluebird bio highlighted the personal stories of nine patients from seven countries, aged between four and 61, living with the rare inherited blood disorder thalassaemia.

The nine patients are featured in a video – ‘Living with Thalassaemia in Europe: Stories from patients of different ages’ – along with national patient group representatives and quotes from clinicians.

The video, filmed during the COVID-19 pandemic, tells the patients’ stories through a mix of selfie videos, still photography and animated facts to show the day-to-day perspectives of living with this condition. Read more about Rare Disease Day on page 25.

In Chris Ross’ article on page 28, Chris looks at mapping the patient journey, focusing on eight ways to improve support programmes. He examines how pharma can drive awareness and adoption of patient support solutions and emphasises that the job of a patient support programme isn’t to make patients reliant on that programme, but to give them the skills, confidence and knowledge to be independent without it.

I hope you enjoy this issue!

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