New evidence based clinical guidelines for the management of hEDS & HSD during #pregnancy #birth published in PLOS ONE this May #EDS awareness month: #MyEDSChallenge thx to The Ehlers-Danlos Society & team: journals.plos.org/plosone/articl… Pls RT Asher Wolf Professor Lara Bloom hEDStogether Ehlers-Danlos Support UK

Yesterday, Rishi Sunak called for a #GeneralElection. For too long, #arthritis has been dismissed and ignored. It's time we come together and demand that the next UK Government makes arthritis a priority. Sign up to hear how you can get involved: action.versusarthritis.org/page/146840/pe…

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…

Excited I can finally share my drawing from the Translating Research into Change Workshop that looked into the experiences and research relating to hEDS/HSD in Scotland. For more info or if you want to help their work please see the lovely Kathryn Berg

As a healthcare professional, I learned loads about a disease I only knew a little bit about and also the inequalities and frustrations that those with hEDS deal with on a daily basis.

It was super to be part of the Occupational Therapy session at the Scottish Society for Rheumatology Spring meeting in Glasgow . Kathryn Berg and I presented our results from the #hEDSSTART study #TranslatingResearchIntoChange reporting the lived experience of #hEDS #HSD

Hope this The BMJ news feature helps to bring about the healthcare changes needed for women with Pregnancy Associated Osteoporosis. Chuffed the story is mentioned on the front cover too. doi.org/10.1136/bmj.q1… #maternity #healthcare #womenshealth #journo #healthjournalism

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 😃

EDS UK has called on the Government to put a clear care pathway in place across the whole of the UK for all people living with #EhlersDanlosSyndrome & #HypermobilitySpectrumDisorder inews.co.uk/news/ehlers-da… The i paper

Delighted and honoured to have received the responsible innovation and engagement award at the research impact festival today for our work with EDS/HSD patients ⁦Ehlers-Danlos Support UK⁩ ⁦The Ehlers-Danlos Society⁩ ⁦Institute of Genetics and Cancer⁩ ⁦Edinburgh Research Office⁩

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

⭐Congratulations⭐ The University’s inaugural Impact Festival concluded with the announcement of the first Research Impact prize winners. Well done to everyone involved in making the first Impact Festival such a great success. Full list of winners ▶️ edin.ac/3VrixYQ

A huge congratulations to Kathryn Berg and  Dervil Dockrell from Centre for Genomic and Experimental Medicine whose hEDS-START project has been awarded the Responsible Engagement and Innovation Award at the inaugural The University of Edinburgh #Impact2024 Festival: bit.ly/3x6w7rr

We are thrilled to share the preprint of our latest research study focusing on the genetic underpinnings of hypermobile Ehlers-Danlos Syndrome (hEDS). researchsquare.com/article/rs-454…

Fantastic to have been in Vienna for #EULAR24 with the best colleagues meeting amazing researchers and hearing about what’s new in RMDs.#FLIPstudy & #hEDSSTARTSTUDY Kathryn Berg IGC Bone Research Team .

In 2022, Punteha van Terheyden saw a TikTok video explaining hypermobile Ehlers-Danlos syndrome (hEDS). Punteha shares her story with Mail+ today. dailymail.co.uk/health/article…

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

Great to be able to contribute to the roundtable discussion on Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder. Thank you to all who took the time to attend. Hopefully it became apparent why there is a need for formal care pathways for those with the conditions.