RareQoL

#ANNOUNCEMENT #EDIRA #EDIRA #EDIRA. I am so proud and delighted to share our EDIRA Building Trust Symposium Report. The event took place in June 2024. We gained ethical permission from University of Chester for the event. I was delighted to be joined as Co-Chair by Associate Professor Dr Andrew Mitchell. We are in the process of analysing the data sets from the pre event questionnaire and from the text from the discussion groups. We aim to submit an academic report for publication. Thank you to our Sponsors NIHR BioResource Takeda Astellas Pharma LifeArc and probono support from Jane Brearley (She/Her) and Sam Fillingham. The report includes some information about EDIRA-25. This is going to be a groundbreaking event. More details Coming soon. #edi #raredisease #research #trust #healthequity #clinicaltrials #DiversityActionPlans #storytelling Genetic Alliance UK Beacon for Rare Diseases Dr Adaugo (Diggi) Onyeador MBBS BSc Naomi Litchfield Leila Neshat Mokadem Humie Webbe Rose Lyons (nee Francis) Lucy McKay Jo Balfour Sickle Cell Society Juping Yu Tai Pawb Practice Solutions Diverse Cymru RACE COUNCIL CYMRU Bernie Davies Realise Advocacy

#BlackHistoryMonth My sister Humie Webbe got a teeshirt printed for me with the caption "I am a walking talking data set". Apparently I am always saying this when I talk about my mixed methods research, so she felt compelled to get this made for me, to highlight my passion for the learning we can gain from personal #stories. The theme for Black History Month for 2024 is: "#Reclaiming_Narratives". It is so important that the stories of our #lived_experience of health and social care services, our work experiences and our contributions to society are heard and retold authentically. Adding a robustness to the analysis and interpretation of our data sets, by researchers who are #culturally_competent and #trauma_informed will highlight and #validate our experiences. There are too many reports of #health_inequalities that we hear about: I am certain there are countless more stories that go untold. We all hold Data Sets within us that tell our stories. #RESEARCHERS work in partnership with us. #CONNECT with us. #LEARN from us. Be part of the movement to make things better for all communites #MAKE_HISTORY Happy Black History Month Prof. Bola Owolabi, MRCGP MFPH(Hon), FRSPH University of Chester Institute for Educational and Social Equity Juping Yu Naomi Litchfield Ola Fagbohun Ola Fagbohun Prof Habib Naqvi MBE Professor Meena Upadhyaya

#EDIRA #EDIRA #EDIRA After a much needed rest following the success of our EDIRA Building Trust Symposium. We are building on this success and have already started planning EDIRA-2025. We are preparing to produce a series of papers to share this learning. We are reflecting on the #Learning: we have learned so much about #inclusive research, better #engagement strategies and of course #Building #Trust. We have been so grateful for the sponsorship from LifeArc Takeda NIHR BioResource Astellas Pharma and support from Jane Brearley (She/Her) Sam Fillingham Costello Medical PIP-UK | Poland Syndrome Support Rose Lyons (nee Francis) Sickle Cell Society Lucy McKay Clare McCrudden Hannah Stark Alfred Samuels One of the great successes for us has been the partnerships we have developed with University of Chester in developing our EDIRA project. I am now proud to announce that along with Humie Webbe have been invited to share some of our learning at an important conference led by colleages from the University of South Wales tomorrow " Trust Matters: no one is hard to reach". The focus is on trust and relationship building with minoritised communities. #equality #Diversity #Inclusive #Research #Association. Practice Solutions Marie Brousseau-Navarro Bernie Davies Prof Habib Naqvi MBE Professor Uzo Iwobi CBE FLSW FRSA Professor Meena Upadhyaya

#EDIRA What a great success!!! We are so proud and thankful to have had such wonderful support for our EDIRA Building Trust Symposium. We want thank our advocates speakers sponsors, and of course everyone who attended. We learned such a fantastic amount. We will be writing up a series of papers to submit for #publication in #partnership with some of our speakers, advocates and participants. We had wonderful expert speakers demonstrating their knowledge and skills in #patient_centricity #inclusive_research and best practice in #PPIE approaches. Our expert #Advocates shared their inspirational stories and lived experience about accessing healthcares services and involvement in #clinicaltrials. The afternoon discussion groups considered issues relates to #Trust. We concluded with discussions and feedback about suggests and actions we can collectively take to BUILD TRUST. Networking with new friends in the evening was a joy. We will begin planning for EDIRA-25 later this year, after the launch of our EDIRA Academy website where we will host our new eLearning and coaching platform. THANK YOU TO EVERYONE INVOLVED. Kim Daybell Sam Fillingham Sickle Cell Society Lucy McKay Clare McCrudden Alfred Samuels Humie Webbe Martins Tanimola University of Chester NIHR BioResource Takeda LifeArc Ameeta Retzer Jane Brearley (She/Her) Rose Lyons (nee Francis)

#EDIRA Announcement!! We are so delighted to announce that Astellas Pharma are one of the Sponsors of our EDIRA Building Trust Symposium. Without funding from our sponsors we would not be able to continue the work of our Equality Diversity and Inclusive Research Association. Our Symposium will be taking place on the 21st June 2024 at Edgbaston Park Hotel and Conference Centre The University of Birmingham. #clinicaltrials #patientadvocates #raredisease #equality #equity #diversity #inclusion #research #funding #Sponsors There is a high demand for ticket book yours today. Follow this link. https://lnkd.in/eQpehzeq

#EDIRA #ANNOUNCEMENT We are so delighted that we will be joined by John James OBE; CEO of The Sickle Cell Society at our EDIRA 2024: Building Trust Symposium. Book your tickets today! Date: Fri, Jun 21 • 09:00 BST Location: 53 Edgbaston Park Road, Birmingham, B15 2RS https://lnkd.in/esA_VqzU #edi #raredisease #clinicaltrials #research #postcode #NHS #equality #equity #diversity #inclusion #edira #cpd

#EDIRA Collaboration is Our Strength! We are extending our Green Sponsorship initialtive to our EDIRA project. We thrive on a two-way collaborative approach. Together, we'll design a pro bono project that addresses this need, creating a win-win for both parties. (Please note: This is NOT an initiative in which we share information to our networks and do a lot of UNPAID work in exchange for KitKats and gift vouchers). The Process: 1. Identify our collective srengths: What skills, resources, or networks do we excel in? Marketing expertise? Legal support? Community outreach? Research funding applications? Fundraising? Joint events? ELearning? Training? Consultancy Projects? 2. Explore Needs: Can we benefit from our unique collective social capital? 3. Agree on a Project: Design a pro bono project that tackles the identified need and leverages your company's social capital for maximum impact. We are so delighted to be working so well with our Green Sponsors. Watch this space for more updates Sam Fillingham Jane Brearley (She/Her) Clare McCrudden Sickle Cell Society Humie Webbe Beacon for Rare Diseases Lucy McKay #probono #sustainability