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 onthepulseconsultancy.com Cambridge, England Joined August 2017-
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On The Pulse Consultancy retweeted
In a guest blog for #RareDiseaseDay, @TheWoollard reflects on what haemophilia gene therapy teaches us about equity, access & adoption of advanced therapies in the NHS. @GeneticAll_UK @CGTCatapult Read it here: abpi.org.uk/media/blogs/20…
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@TheWoollard, Director of On The Pulse, has joined the @IMABQistudy as Patient Research Team Leader – a part-time role under academic contract with @uniofleicester. 🔗 Read more: onthepulseconsultancy.com/new-role-patie… @NIHRresearch
On The Pulse Consultancy retweeted
🩸#WorldHemophiliaDay patient spotlight: @TheWoollard 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: bit.ly/43XOWuW
🧬 𝐍𝐨𝐰 𝐥𝐢𝐯𝐞: 𝐁𝐥𝐨𝐠 𝐨𝐧 𝐚 𝐧𝐞𝐰 𝐞𝐝𝐢𝐭𝐨𝐫𝐢𝐚𝐥 𝐨𝐧 𝐧𝐞𝐰𝐬 𝐦𝐞𝐝𝐢𝐚 & 𝐠𝐞𝐧𝐞 𝐭𝐡𝐞𝐫𝐚𝐩𝐲. @TheWoollard & @SustainableRich explore how news media hype may shape perceptions of gene therapy in haemophilia. 👉 Read: onthepulseconsultancy.com/new-publicatio… @TARareDisease
On The Pulse Consultancy retweeted
🚨 New publication! @SustainableRich 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 @PulseInSync @BSMSMedSchool @TARareDisease
On The Pulse Consultancy retweeted
It was definitely epic, I avoided the Hangry thanks to the sweet station and had recorded a fabulous podcast with @TheWoollard and @ncmediatv, topic to be revealed soon!
On The Pulse Consultancy retweeted
My experience, learnings and reflections of undertaking the Health Policy MSc at @imperialcollege 👇🏻 Heading into the final two weeks 😬 Thanks @Imperial_IGHI for inviting me to contribute to the blog! @PulseInSync #Postgrad #Masters
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 @imperialcollege
On The Pulse Consultancy retweeted
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 @imperialcollege
On The Pulse Consultancy retweeted
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…
UPDATE: The survey has been extended by one week and will now close at 5pm on Friday 10th May 2024.
A new #survey has been launched to better understand how UK-based #raredisease patient advocacy groups account for their members’ socioeconomic position when developing decision aids for #genetherapy. See here: onthepulseconsultancy.com/survey-launche… @Imperial_IGHI @imperialcollege @HaemoSocUK
On The Pulse Consultancy retweeted
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 @PulseInSync @imperialcollege
On The Pulse Consultancy retweeted
Excited to talk (virtually) at the #WFHcongress2024 with @TheWoollard 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
Great to see @TheWoollard @SustainableRich joining us virtually in a recorded video evaluating reclassifying haemophilia based on outcomes & phenotype #WFHCongress2024
On The Pulse Consultancy retweeted
Great to see @TheWoollard @SustainableRich joining us virtually in a recorded video evaluating reclassifying haemophilia based on outcomes & phenotype #WFHCongress2024
On The Pulse Consultancy retweeted
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 @TheWoollard @SustainableRich @DRosenfelt @SageClinMed
On The Pulse Consultancy retweeted
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! 🎉
On The Pulse Consultancy retweeted
The UK #raredisease community was out in force yesterday for @RareBeacon’s #RareShowcase23 🦓 Superb talks involving system-wide stakeholders. Group 📸 w/ Lorna Allen (@cftrust) & Nick Meade (@GeneticAll_UK), co-members of @CGTCatapult’s ATMP Engage initiative. @PulseInSync
On The Pulse Consultancy retweeted
📸 at @camraredisease’s #RAREsummit23 today with co-chairs of ‘ATMP Engage’, Finn Willingham (@CGTCatapult) & Nick Meade (@GeneticAll_UK). Webinar on 8th Nov about PPIE in the delivery of ATMPs in the NHS. Register here 👉🏻 event.on24.com/wcc/r/4374097/… @PulseInSync #raredisease
A Letter to the Editor co-authored by @SustainableRich, Research Fellow @BSMSMedSchool & @TheWoollard, Director @PulseInSync, has been published in the latest issue of @JTHjournal on the debate around reclassifying #haemophilia. Read more 👉 onthepulseconsultancy.com/publication-co… #hemophilia
On The Pulse Consultancy retweeted
Delighted to co-author this Letter with @SustainableRich on reclassifying #haemophilia through a lens of lived experience, published in @JTHjournal. The original piece by Thachil et al. & the reply by @ProfMakris & @GuyYoungMD was missing the patient perspective… until now 👇🏻
Recently, Thachil & colleagues published in @JTHjournal arguing for a reclassification of #hemophilia. @ProfMakris & @GuyYoungMD responded. And now so have @TheWoollard and I. We believe it's vital such discussions involve people living with #haemophilia: authors.elsevier.com/a/1ho005TuFxF4…
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