RareQoL

27/10/2026

Black Voluntary Sector Research Network (BVSRN): a cross-sector research network for Global Majority Voluntary Sector (GMVS) organisations in Wales.

Really grateful to have been invited by Professor Roiyah Saltus (University of South Wales) to be involved in a research project funded by the Learned Society of Wales.

BVSRN brings together research-active voluntary and third sector organisations serving Global Majority communities in Wales, alongside university-based researchers. The membership spans youth and community organisations, African diasporic arts and performance studies, women' s health,, rare diseases, equalities and inclusive research organisations.

As this project comes to an end, it also signals the formation of a new network in Wales that I will be proud to be part of.

There is a clear overlap with our EDIRA VOICES work (Equality Diversity and Inclusive Research Association: Voices Of Inclusion for Community Engagement in Studies). I am excited about the collaboration opportunities with research-active minority ethnic communities, and colleagues at the University of South Wales.

14/10/2026

I am on the list for .

Proud to be a member of ISPEP, and this will be my first in-person event. I am really glad it is in York and I am looking forward to the workshops and, most of all, the networking.

Inspire for Impact feels aspirational and forward-looking. Excited to build a closer relationship with ISPEP going forward.

If you are attending and want to connect that would be great.

08/10/2026

Equality, Diversity and Inclusive Research Association (EDIRA)

When we talk about inclusive research, we often focus on representation and access (which matters). But one of the most important foundations is psychological safety.

As a community psychologist, I see how important it is to be trauma-informed when engaging with patient communities, whether that’s recruitment for clinical trials, interviews and focus groups, or consulting with advisory groups.

If we are asking people to recall traumatic experiences (loss of a child, a devastating diagnosis, repeated dismissal, discrimination, or a long diagnostic journey) and we’re not trauma-informed, we can unintentionally cause harm.

This can show up as distress, anger, or withdrawal. It can damage trust with individuals, patient groups and communities, because it signals a lack of understanding of the condition and lived experience. It also affects the quality of the evidence: people share less, or share what they think we want to hear, because the space doesn’t feel safe.

In our EDIRA Academy Inclusive Research Course, we include practical ways to build psychological safety into research conversations, including a simple RAG rating tool to help teams recognise signs of research fatigue or distress in the moment and respond appropriately (GREEN/AMBER/RED), with clear “what we do / what we say / what we record” prompts.

If you’re involved in patient engagement, service evaluation, or research interviews/focus groups: where do you see psychological safety breaking down most often, and what tools would help your team respond better?

I’d really value your thoughts in the comments.

Ready to build trauma-informed, inclusive research that protects people and strengthens evidence?

You can express your interest in registering for the course here: https://lnkd.in/e5TQcV-d

06/10/2026

📣 EDIRA VOICES™: Inclusive Research in Practice (Intro Course)

A 3-hour, trauma-aware introduction for researchers, patient engagement and PPIE practitioners who want to make research more inclusive, accessible and relevant.

What’s included:
• Micro-learning eLearning unit
• Workbook + toolkit
• A clear foundation in inclusive research (without overwhelm)

Available 30 November 2026 | £15

Taking more than one module? EDIRA Academy Network membership is £60/year and includes this course, plus early access to new modules as the pathway develops.

Explore / enrol here: https://edira-academy.thinkific.com/products/courses/inclusive-research-course

DM

16/09/2026

I was so delighted to have the opportunity to deliver this Cultural Competence Awareness Session for the team at Metabolic Support UK.

Huge thanks to Kirsty for the lovely feedback. It is a reminder that trust is not a soft add-on. It is the foundation that shapes whether people feel safe, seen, and able to engage.

In rare disease spaces (and across health, social care, research, and community engagement), trust influences:
• who participates and who opts out
• how safe people feel to share their experiences
• the quality of insight we gather
• whether relationships hold when things get hard

If your organisation would benefit from cultural competence training that is practical, trauma-aware, and rooted in real-world community engagement, direct message me and I will share options.

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