Our commitment 

Beacon is committed to improving health equity and inclusion for people living with rare diseases.

Rare disease patients deserve health equity and inclusion, but sadly don’t always receive it. No two patients or families have the same perspective on a rare diagnosis. We all come from different backgrounds and bring our lived experiences to the table. Our ethnicity, race, gender, religion and socioeconomic status all influence our views and beliefs.

At Beacon, we recognise that health inequalities are prevalent throughout the UK. The rare disease patient group community lacks diversity and representation. We are continually working to better understand this disparity so that we can address and change it. We firmly believe that no one should face their rare journey alone. That stands true for everyone regardless of race, religion, gender, socioeconomic background or sexual orientation. We see you and hear you.

We are committed to making a difference for every member of the rare disease community. We are always learning and recognise that more needs to be done to bring about lasting change. If you have ideas on how we can make our work more inclusive, please get in touch. We are always open to suggestions.

How we advocate for equitable care for rare disease patients and families

We are proud to be a member of the Breaking Down Barriers (BDB) network. BDB is a network of over 50 organisations that are working together to address health inequalities.

The network supports individuals from marginalised communities to ensure that families can access accessible healthcare services, regardless of their background, race, gender or sexual orientation. BDB shares good practices and guidelines for engaging with diverse communities with its members, so every member can better support those they serve.

Patient organisations and support groups have an important role to play in developing inclusive services for the UK’s multi-ethnic population. We pledge to play our part in advancing health equity for those living in the UK and abroad as part of the BDB network.

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