2/ This graph shows the diagnosis rates of autism, AD(H)D, and dyslexia reported by Scottish respondents to the hEDS-START survey, compared with UK prevalence rates from National Autistic Society, ADHD UK, and British Dyslexia Association #hEDS #HSD #ASD #ADHD #Dyslexia #EDSAwarenessMonth Ehlers-Danlos Support UK

3/ It is important to point out here that 90% of our study population identified as female, while autism and AD(H)D are generally more likely to be diagnosed in boys and men. #hEDS #HSD #ASD #ADHD

4/ To further investigate the rates of autism reported in our hEDS/HSD population, we used a tool called the AQ50. Though not a diagnostic tool, its developers note that only 2% of a non-autistic population would record a score of ≥32 in this questionnaire.

5/ 47% of our Scottish survey respondents recorded a score of ≥32 in the AQ50, suggesting that people with hEDS/HSD show high levels of autistic traits. This could also point to an under-diagnosis within the hEDS/HSD community, though further research is required.

A big thank you to @JGjanegreen, Dr Sarah E. Bennett, SEDSConnective, Dr Catherine Crompton, Sinead Rhodes and Kimia Witte for all of their advice and support with this section of the #TranslatingResearchIntoChange report! Read here: books.ed.ac.uk/edinburgh-diam…

Proud to be part of the team. Just to clarify the work was mainly done by Elizabeth Orhadje, Kathryn Berg and Stuart Ralston. Elizabeth gave an excellent presentation 😃

Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders! buff.ly/3ob40zM #MedEd #FOAMed #MedTwitter #NEISvoid

Sara 💙💛 🇺🇦 giving us a brilliant Cabaret of Dangerous Ideas talk at the Impact Festival 👏

This a'noon, I was absolutely delighted to attend the 1st The University of Edinburgh#IMPACT2024 Awards event & see 2 wonderful colleagues win the 'Responsible Innovation & Engagement' award. HUGE congratulations Kathryn Berg & Dervil Dockrell on your fab hEDS-START project. Centre for Genomic and Experimental Medicine Institute of Genetics and Cancer

It was a joy to see Sara Brown describe her experiences of sharing her clinical research on excema @CODIfringe. Sara had us all examining our hands, ably assisted by the irrepressible Susan Morrison. Lovely Institute of Genetics and Cancer colleagues Sarah Robertson & Generation Scotland were shortlisted for awards.

A very well-deserved recognition of your passion and perseverance! Congratulations 👏

Me on the 6 o’clock news talking about EPIC Think Learn @InformEpic

Read this new preprint by @CGATist from MRC_HGU.

SO delighted that our feasibility and acceptability study of the Neurodivergent peer Support Toolkit (NEST) materials is OUT!! 🥳 journals.sagepub.com/doi/10.1177/27…

The hEDS-START team (Dervil Dockrell Kathryn Berg) are engaging with policymakers on the findings of thier report on the lived experiences of those with hypermobile Ehlers-Danlos Syndrome & Hypermobile Spectrum Disorders in Scotland. Read more here: ed.ac.uk/institute-gene…

I hosted an Ehlers-Danlos syndrome roundtable to bring together Ehlers-Danlos Support UK, parliamentary colleagues, clinicians and those with lived experience of the condition to discuss EDS and particularly the pressing need to establish new care pathways. Thank you to all who attended.

Kathryn Berg and I were back in Scottish Parliament today, sharing the results of the hEDS-START study at a round table hosted by Michael Marra MSP, and asking MSPs to commit to the development of a care pathway for hEDS/HSD patients in Scotland. #heds #hsd

ART-TRAnslations, a collaboration between artists, rare disease researchers and patient representatives, involving IGC’s Kathryn Berg , has created this piece to highlight the experiences of the rare bone disease Pregnancy Associated Osteoporosis (PAO). Cambridge Rare Disease Network (CamRARE)

Delighted this paper on masking in neurodivergent girls is now published, linked resources for parents and teachers below