Celebrate the Doers

On 7 November 2025, our community came together for “Let’s COCO and Celebrate the Doers” – a day dedicated to people turning inclusive research principles into practice.

What Next

We’re delighted to share one of the most impactful outcomes of the event: the Book of Doers. Our next campaign "Whose Voice is it Anyway?"

Inclusive Research Publications

Dr Sondra Butterworth  (RareQoL CEO) and Associate Professor Dr Andrew Mitchell  (University of Chester) Co-chair EDIRA, and have successfully published research papers related to inclusive research.

About: EDIRA Academy Network

Let’s COCO and Celebrate the Doers – now live on the EDIRA Academy Network! 🎥 What you can access on the EDIRA Academy Network When you sign up, you can explore: Full presentations and videos from the 7 November 2025 event The Book of Doers as a practical learning and teaching resource An active chat space where members of our network are discussing the presentations, sharing reflections, and co-creating ideas ⏱️ Free, time-limited access For a limited period, you can sign up for free to access the event content and join the discussion on the EDIRA Academy Network. This is especially relevant for colleagues in: Patient Engagement Specialists. Health and social care Pharmaceutical and biotech Public sector and charities Academia and clinical research

Curriculum

4 Chapters · 24 Lessons

  1. 1

    Conference Program

    1. (Included in full purchase)

      Welcome

    2. (Included in full purchase)

      Program

    3. (Included in full purchase)

      Speaker Biographies

    4. (Included in full purchase)

      Welcome Dr Sondra Butterworth and Associate Professor Dr Andrew Mitchell: EDIRA Co-Chairs

    5. (Included in full purchase)

      Dr Tanimola Martins: University of Exeter - Addressing Ethnic Inequalities in Cancer Diagnosis

    6. (Included in full purchase)

      Jodie Chan : Imperial and Sarah Hancock Marylebone Project - SHE HEALS: Supporting Health Equity through Holistic Empowerment, Art, and Lived Experience Study

    7. (Included in full purchase)

      Hannah Stark : NIHR BioResource. Donna Miller Sandra Oppong - Embedding Improving Black Health Outcomes (IBHO) recruitment in community organisations

    8. (Included in full purchase)

      Janelle Kolas: PIP UK / Birmingham Newman University - Understanding Surgical Outcomes in Poland Syndrome

    9. (Included in full purchase)

      Lindsay Birrell: Realise Advocacy - Rare Care: an evaluation of the lived experiences of rare disease patients and families related to the implementation of the Rare Diseases Framework

    10. (Included in full purchase)

      Leila Neshat Mokadem: Equity Lighthouse / Robert Gordon University - Exploring the Tapestry of Public Involvement in Health Research through an Intersectional Weave of Gender and Race.

    11. (Included in full purchase)

      Naomi Litchfield : Bionical Emas and Dr Sondra Butterworth - The Patient Voice

    12. (Included in full purchase)

      Dr Lucy McKay: Medics 4 Rare Disease - Medics for Rare Disease Genomics Education Programme.

    13. (Included in full purchase)

      Jayne Hughes: Amy and Friends - Childhood Dementia in Rare Disorders

    14. (Included in full purchase)

      Andrew Wilhelmsen and Katie Lister: Costello Medical - Co-Creation of Self Advocacy Comic Books for Children Living with Hyperinsulinism’,

    15. (Included in full purchase)

      Serena Rianjongdee: Intent Health - A review of NHS Health Communications with (and for) Jewish Communities

    16. (Included in full purchase)

      Chris Wingrove and Natalie Tuzcuoglu : Amicus Therapeutics Farhana Darwich BLACHIR - The HEAL-RD Project: Health Equity for All: tackling Local racial and ethnic disparities in Rare Diseases

    17. (Included in full purchase)

      Final Remarks: Next Steps - Dr Sondra Butterworth and Dr Andrew Mitchell

  2. 2

    Expert Panels

    1. (Included in full purchase)

      Expert Panel 1 Part 1

    2. (Included in full purchase)

      Expert Panel 1 Part 2

    3. (Included in full purchase)

      Expert Panel 2 Part 1

    4. (Included in full purchase)

      Expert Panel 2 Part 2

  3. 3

    Speaker Presentations

    1. (Included in full purchase)

      Speaker Presentations Part 1: Inclusive Research

    2. (Included in full purchase)

      Speaker Presentations Part 2: Health Education, Rare Disease Advocacy, EDI Service Improvement and Innovation

  4. 4

    The Book of Doers

    1. (Included in full purchase)

      The Book of Doers

Contact us

If you would like to work with us: get in touch today!

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