RareQoL

03/09/2026

Yes!!! We have worked so hard over the past 6 years in the rare disease soace th see this happen. RareQoL EDIRA have a consultation meeting on Monday 7th September VOICES in the room. I will share this. We will be watching and waiting.

Clinically led approach to clear longest waits and bring the overall waiting list down to pre-pandemic levels before the end of this Senedd term. More surgical capacity targeting the specialities where waits are longest. Improvements to how patients are referred and how follow-up appointments are ma...

16/06/2026

So, you decided to have a patient-focused event. But not include the patients. How strange??

This isn't just ironic—it's a fundamental contradiction. How can an event be patient-focused if patients aren't there? How can you claim to centre patient voice while excluding the people whose voices matter most?

This happens more often than you'd think. Organisations plan "patient engagement" initiatives without involving patients. They design "community-led" programmes without community input. And then they're surprised when communities don't trust them.

Real patient-focused work means patients are there from the start. They shape the agenda, lead the conversations, and their expertise drives outcomes.

At EDIRA Academy, we're helping organisations get this right. Our Community Engagement workbook shows you how to genuinely centre patient and community voice.

👉 https://edira-academy.thinkific.com/products/digital_downloads/community-engagement-1

16/06/2026

When one small change restored trust 💛

A family felt heard, included, and ready to join. That matters more than any survey score.

At RareQoL, these moments remind us why inclusive research is so important. If you work in pharma, research, or community engagement, what would help your teams build more trust?

Join the conversation and explore more at edira-academy.co.uk.

05/06/2026

What happens when communities lead research? 💬

We hear better questions, build stronger trust, and create findings that truly reflect lived experience.

In rare disease and ethnic minority health equity, patient and community voices are not an extra. They are essential.

We are building an EDIRA Academy Network and explore how co-production can shape more inclusive, practical research. Get in touch if you want to learn more.

05/06/2026

His story started with silence. 💙

Then one advocate found his voice, and a community supported him.

At RCNet, we see how lived experience changes everything. It shapes better support, stronger research, and more human care.

If you believe real stories should lead change, join RCNet and help us grow the Circle of Doers.
JOIN FOR FREE TODAY.

https://forms.office.com/Pages/ResponsePage.aspx?id=BFIfhV_VxEOm2ZEIyroNoWuRgjyWJz5Gq6cFyCoGmO1URFpKRUtWWDBaNDFQOUg2RzhZN05VRk9QUi4u

04/06/2026

Whose voice is missing from research?

Real insight starts with listening. When patients and communities shape the conversation, research becomes more relevant, trusted, and human. 💛

We are building an EDIRA Academy Network, we’re sharing practical ways to bring rare disease and ethnic minority voices into the heart of inclusive research.

Join us, and help make space for the voices that matter most.

Get in touch if you want learn more.

03/06/2026

Inclusive Research and Patient Engagement or Just Data Extraction?

Have you heard of "helicopter researchers"? 🚁

They're researchers who drop into communities, grab what they need, and disappear. No partnership. No benefit. No care for the impact they leave behind.

Sound familiar? It happens more often than we'd like to admit.

The truth is: communities are tired of being treated as data sources. They deserve better.

✨ Real inclusive research looks like this:
• True partnership and collaboration
• Communities benefit from the research
• Trauma-informed, respectful approaches
• Ongoing commitment, not one-off visits

At EDIRA, we're building a different way. We believe research should transform communities for the better, not extract from them.

Your voice matters. Your experience matters. Your community matters.

Let's do research differently together. 💚

31/05/2026

Building trust!
Breaking barriers!
Real change starts here!

What if every to could be named—and tackled—together? See how diverse voices and authentic action are reshaping rare disease research for good.

Ready to change youe practice? Let’s connect and make equity real. 🌍

30/05/2026

Ready to simplify today?

Discover our practical checklists, editable templates, and mini-workbooks—all designed for real teams, real impact.

We are building am EDIRA Academy

Curious to see how easy it can be?

Get in youch and book a meeting. ☕

30/05/2026

Real change starts with lived experience.

What happens when rare disease leadership is truly ? You get voices that listen, lead, and lift others up.

Patient communities can bring their story and expertise to every duscusion or consultation, making sure every perspective is heard.

Curious about how real equity looks in practice? 🌟

Ready to be part of the ? Message us to connect.