Celebrated soft launch of Metabolic Support UK’s ‘Thoughts into Action’ Report in Parliament today. Highlights perceived QoL & intersectional experiences of those living with inherited metabolic disorders and disabilities. 📸 with Kirsty Hoyle, CEO of MS UK & David Rose #raredisease

Recently, Thachil & colleagues published in JTH arguing for a reclassification of #hemophilia. Michael Makris & Guy Young responded. And now so have Laurence Woollard and I. We believe it's vital such discussions involve people living with #haemophilia: authors.elsevier.com/a/1ho005TuFxF4…

Delighted to co-author this Letter with Dr Rich Gorman on reclassifying #haemophilia through a lens of lived experience, published in JTH. The original piece by Thachil et al. & the reply by Michael Makris & Guy Young was missing the patient perspective… until now 👇🏻

A Letter to the Editor co-authored by Dr Rich Gorman, Research Fellow BSMS & Laurence Woollard, Director On The Pulse Consultancy, has been published in the latest issue of JTH on the debate around reclassifying #haemophilia. Read more 👉 onthepulseconsultancy.com/publication-co… #hemophilia

📸 at Cambridge Rare Disease Network (CamRARE)’s #RAREsummit23 today with co-chairs of ‘ATMP Engage’, Finn Willingham (Cell and Gene Therapy Catapult) & Nick Meade (Genetic Alliance UK). Webinar on 8th Nov about PPIE in the delivery of ATMPs in the NHS. Register here 👉🏻 event.on24.com/wcc/r/4374097/… On The Pulse Consultancy #raredisease

The UK #raredisease community was out in force yesterday for Beacon for Rare Diseases’s #RareShowcase23 🦓 Superb talks involving system-wide stakeholders. Group 📸 w/ Lorna Allen (Cystic Fibrosis Trust) & Nick Meade (Genetic Alliance UK), co-members of Cell and Gene Therapy Catapult’s ATMP Engage initiative. On The Pulse Consultancy

It's finally arrived: April 17th! Today marks #WorldHemophiliaDay—a day dedicated to celebrating our global community. From all of us at the WFH, we wish you a joyous #WHD2024! 🎉

Today is #WorldHemophiliaDay! 🩸 So we wanted to share some of the research we have published in this area! Improving patient informed consent for #haemophilia #genetherapy: the case for change bit.ly/49FONvh Laurence Woollard Dr Rich Gorman Dakota Rosenfelt, PharmD, RPh, MBA Sage Clinical Med

Great to see Laurence Woollard Dr Rich Gorman joining us virtually in a recorded video evaluating reclassifying haemophilia based on outcomes & phenotype #WFHCongress2024

Excited to talk (virtually) at the #WFHcongress2024 with Laurence Woollard bringing a sociological perspective to thinking about the categories, classifications, and language used in rare disease care, and how this can impact people living with bleeding disorders

Take part in a new survey for UK-based rare disease patient groups on gene therapy decision aids! 📝 Accounting for socioeconomic position in patient decision aids for gene therapy Find out more and get involved: 👇 ow.ly/QOAT50RnXYm On The Pulse Consultancy Imperial College London

Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Listen & Subscribe 👉 bit.ly/bloodstream_po…

In a new blog post, MSc Health Policy student Laurence Woollard shares his insights into the Master's programme Read the Q&A with Laurence: blogs.imperial.ac.uk/ighi/2024/07/2… #HealthPolicy #MScChat #Masters Imperial College London

My experience, learnings and reflections of undertaking the Health Policy MSc at Imperial College London 👇🏻 Heading into the final two weeks 😬 Thanks Institute of Global Health Innovation for inviting me to contribute to the blog! On The Pulse Consultancy #Postgrad #Masters

It was definitely epic, I avoided the Hangry thanks to the sweet station and had recorded a fabulous podcast with Laurence Woollard and Nicola Hill💙, topic to be revealed soon!

🚨 New publication! Dr Rich Gorman and I explore how sensationalised news media coverage may shape perceptions of gene therapy in haemophilia — especially when framed as a “cure.” 🔗 journals.sagepub.com/doi/10.1177/26… #hemophilia #raredisease On The Pulse Consultancy BSMS Therapeutic Advances in Rare Disease

🧬 𝐍𝐨𝐰 𝐥𝐢𝐯𝐞: 𝐁𝐥𝐨𝐠 𝐨𝐧 𝐚 𝐧𝐞𝐰 𝐞𝐝𝐢𝐭𝐨𝐫𝐢𝐚𝐥 𝐨𝐧 𝐧𝐞𝐰𝐬 𝐦𝐞𝐝𝐢𝐚 & 𝐠𝐞𝐧𝐞 𝐭𝐡𝐞𝐫𝐚𝐩𝐲. Laurence Woollard & Dr Rich Gorman explore how news media hype may shape perceptions of gene therapy in haemophilia. 👉 Read: onthepulseconsultancy.com/new-publicatio… Therapeutic Advances in Rare Disease

🩸#WorldHemophiliaDay patient spotlight: Laurence Woollard uses his platform to advocate for people living with hemophilia. From raising awareness to pushing for policy change, his journey is a powerful reminder of how lived experience can shape meaningful progress: