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Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day was set up and is coordinated by EURORDIS (Rare Diseases Europe) and 65+ national alliance patient organisation partners.
Here in the UK, Genetic Alliance UK coordinates many of the events and awareness raising in the UK throughout Rare Disease Day.
Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Rare communities take the opportunity to raise awareness of their own conditions as well as collectively recognising the struggles that people with rare conditions face.
In these All About Equity podcasts you will hear from the communities themselves, talk about what matters most.
Including giving their top tips and ways we can all make a difference to make lives fairer and more equitable in the future.
If you’d like to share your experiences in a safe and supportive space — either through a future podcast or in one of our Focus Groups — we’d really welcome you.
Please feel free to reach out to Catherine by email Catherine.lewis@alstrom.org.uk
Find out more about Rare Disease Day and find out what is happening near you on the Rare Disease Day website.
Thank you to everyone who shared their experiences and insights as part of this campaign.
In this All About Equity podcast, Marie McGee, Alström Syndrome UK National Transition Coordinator, speaks with Hamza about his lived experience of living with a rare condition and navigating healthcare through an equity lens.
Hamza shares powerful insights into what inclusive, respectful care can look like, alongside practical recommendations to support diverse communities. He also offers encouragement and strategies for self-advocacy—helping listeners feel more confident asking questions, raising concerns, and finding the right support.
In this episode of All About Equity, Catherine Lewis (Alström Syndrome UK / BDB Operations Manager) speaks with Aneeba about her lived experience of living with a rare condition.
Aneeba shares how the right support has shaped the person she is today — helping her feel seen, understood, and empowered, while ensuring her individual needs are recognised and met. She reflects on what meaningful equity looks like in real life, and how personalised support can make a lasting difference.
“Special is not being special. Special is getting the support that, that person needs in life.”
Aneeba also offers a brilliant range of practical tips and recommendations to help services, professionals, and communities provide more inclusive, respectful and equitable support for people living with rare conditions.
In this powerful and deeply moving episode of All About Equity, Sophie Mira-Roberts, BDB Lived Experience Coordinator, speaks with Charmaine Abdul-Karim, Founder of Pride of Romany, a charity representing the British Romanichal people, and Alexus Stanley, American Romanichal and American representative of Pride of Romany.
Charmaine and Alexus share an honest, reflective and emotional conversation about their lived experiences, their history, and the ongoing erasure of Romanichal identity under the collective term “GRT” – Gypsy, Roma and Traveller communities.
While Gypsy, Roma and Traveller communities may share experiences of discrimination and inequality, they each have distinct histories, cultures, languages and identities that deserve recognition in their own right.
This episode explores why recognition matters — not only for cultural dignity, belonging and wellbeing, but also for equity in policy, education and healthcare.
It is a powerful conversation, showing the importance of speaking to communities themselves, naming communities accurately, and that this invisibility does not continue to shape systems and services.
In this episode, one of our Experts by Experience, focus group members shares their insights and lived experience of living with the rare condition, Sickle Cell.
They explore when things haven’t been equitable for them and what needs to change to make things more equitable in the future.
Catherine (Operations Manager at Alström Syndrome UK/Breaking Down Barriers) was delighted to be chatting with Melissa, the Alström Syndrome Wellbeing Coordinator who also has lived experience of living with this rare and complex condition.
She explores the challenges of living with the rare condition, when things haven’t been equitable for her and she gives great top tips for the community to have their voice heard, and ways in which healthcare professionals can be more equitable, accessible and inclusive and support our communities more effectively.
Kerry Leeson-Beevers, attended the Westminster Rare Disease Day reception at the House of Commons on Tuesday. The theme of Rare Disease Day 2026 is Equity, and it was clear from listening to the excellent speakers Alison and Sophie, (Breaking Down Barriers Lived Experience Coordinator) that much more needs to be done to make things more equitable for people living with rare conditions. A huge thank you to Genetic Alliance UK for organising such a fabulous event and for highlighting lived experiences in their Rare Disease Day 2026 report.
‘Equity for rare: Delivering fairer healthcare systems for people with rare conditions’
Minister Ashley Dalton announced the publication of the 2026 England Rare Disease Action Plan that has now been published and can be found here
England Rare Diseases Action Plan 2026 – GOV.UK
Sue Farrington also shared information about the development of The NICE Quality Standards for Rare Conditions. A very big thank you to Sue and members of the wider rare disease community for their excellent leadership on this great work.
