
On The Pulse Consultancy
@pulseinsync
Independent strategic consultancy by @TheWoollard partnering with industry and multi-agencies on patient advocacy and policy-related activities in rare disease
ID: 901465944500957184
https://onthepulseconsultancy.com/ 26-08-2017 15:26:44
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Celebrated soft launch of Metabolic Support UKโs โThoughts into Actionโ Report in Parliament today. Highlights perceived QoL & intersectional experiences of those living with inherited metabolic disorders and disabilities. ๐ธ 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/1ho005TuFxF4โฆ


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 perspectiveโฆ until now ๐๐ป

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 ๐ onthepulseconsultancy.com/publication-coโฆ #hemophilia

๐ธ at Cambridge Rare Disease Network (CamRARE)โs #RAREsummit23 today with co-chairs of โATMP Engageโ, 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 ๐๐ป event.on24.com/wcc/r/4374097/โฆ On The Pulse Consultancy #raredisease


The UK #raredisease community was out in force yesterday for Beacon for Rare Diseasesโs #RareShowcase23 ๐ฆ Superb talks involving system-wide stakeholders. Group ๐ธ w/ Lorna Allen (Cystic Fibrosis Trust) & Nick Meade (Genetic Alliance UK), co-members of Cell and Gene Therapy Catapultโs ATMP Engage initiative. On The Pulse Consultancy



Today is #WorldHemophiliaDay! ๐ฉธ 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! ๐ Accounting for socioeconomic position in patient decision aids for gene therapy Find out more and get involved: ๐ ow.ly/QOAT50RnXYm On The Pulse Consultancy Imperial College London


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/2024/07/2โฆ #HealthPolicy #MScChat #Masters Imperial College London


My experience, learnings and reflections of undertaking the Health Policy MSc at Imperial College London ๐๐ป Heading into the final two weeks ๐ฌ 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 Hill๐, topic to be revealed soon!


๐จ New publication! Dr Rich Gorman and I explore how sensationalised news media coverage may shape perceptions of gene therapy in haemophilia โ especially when framed as a โcure.โ ๐ journals.sagepub.com/doi/10.1177/26โฆ #hemophilia #raredisease On The Pulse Consultancy BSMS Therapeutic Advances in Rare Disease

๐งฌ ๐๐จ๐ฐ ๐ฅ๐ข๐ฏ๐: ๐๐ฅ๐จ๐ ๐จ๐ง ๐ ๐ง๐๐ฐ ๐๐๐ข๐ญ๐จ๐ซ๐ข๐๐ฅ ๐จ๐ง ๐ง๐๐ฐ๐ฌ ๐ฆ๐๐๐ข๐ & ๐ ๐๐ง๐ ๐ญ๐ก๐๐ซ๐๐ฉ๐ฒ. Laurence Woollard & Dr Rich Gorman explore how news media hype may shape perceptions of gene therapy in haemophilia. ๐ Read: onthepulseconsultancy.com/new-publicatioโฆ Therapeutic Advances in Rare Disease

๐ฉธ#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:
