Stronger Together

Rebecca and Hannah portrait Article 09.11.20

COVID-19, Co-production and a very Rare year.

At the end of January this year, my daughter Hannah and I boarded a train to London…

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Lucinda and Nola portrait Social 16.11.20

Lucinda’s social series

This week Lucinda, mother to Nola, highlights her journey to diagnosis…

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Alan's portrait Article 23.11.20

I have a Rare disease and I am crossing borders

I cross many Borders, as a person who happens to have a rare disease…

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Sally portrait Article 30.11.20

The Grey Area – Living with an Invisible Rare Disease

I remember vividly the moment when a passenger got on the bus…

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June portrait Article 07.12.20

The life and death of a blossoming rose

What ails you darling child? Mum would say to me…

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Nicola portrait Article 14.12.20

One Rare Disease. Two Settings.

2017: I once worked at a place where it became a requirement to wear gloves…

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Prabhjot portrait Article 10.02.21

Stepping into 2020 with COVID

I can barely type right now. I literally got the energy to type…

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Mel portrait Podcast 11.01.21

Mel’s podcast with Jess from Metabolic Support UK

This week changemaker Mel speaks to Jess Doyle from Metabolic Support UK…

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Emma portrait Article 18.01.21

Educating The Next Generation For A More Inclusive World

Like many disabled people, I’m no stranger to poor access and bad attitudes towards disability…

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Jack portrait Social 25.01.21

Jack’s Instagram Q+A

This week changemaker Jack is carrying out an ‘Ask me anything’ style Instagram Q+A…

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Shona portrait Article 01.02.21

The unpredictability of having a rare condition

Life can be unpredictable, a lesson we have all learnt the hard way…

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Rachel portrait Video 08.02.21

Rachel and Lara’s video interview part 1

This week changemakers Rachel and Lara caught up to discuss their…

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Lara portrait Video 17.02.21

Lara and Rachel’s video interview part 2

This week, changemakers Lara and Rachel met to continue their conversation…

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Chloe and Ronnie portrait Social 01.03.21

Chloe and Ronnie’s experience of MPS II

This week Chloe, mother to Ronnie, talks about her experience of…

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Karen portrait Podcast 08.03.21

Karen’s podcast with Laura from HAE UK

This week changemaker Karen speaks with Laura Szutowicz CEO of HAE UK, about living with the HAE…

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Zainab portrait Video 15.03.21

A day in the life of Zainab: caring for Adnan and her family

This week, changemaker Zainab has documented her daily routine in a video diary…

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David portrait Video 22.03.21

David’s video interview with Lucy, CEO of Medics For Rare Disease

This week changemaker David speaks with Lucy, CEO of Medics For Rare Diseases about what it is like…

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This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.
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