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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š©ø#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:ā¦
š§¬ ššØš° š„š¢šÆš: šš„šØš šØš§ š š§šš° ššš¢ššØš«š¢šš„ šØš§ š§šš°š¬ š¦ššš¢š & š šš§š šš”šš«šš©š². @TheWoollard & @SustainableRich explore how news media hype may shape perceptions of gene therapy in haemophilia. š Read: onthepulseconsultancy.com/new-publicatioā¦ @TARareDisease
šØ New publication! @SustainableRich and I explore how sensationalised news media coverage may shape perceptions of gene therapy in haemophilia ā especially when framed as a ācure.ā š journals.sagepub.com/doi/10.1177/26ā¦ #hemophilia #raredisease @PulseInSync @BSMSMedSchool @TARareDisease
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!
My experience, learnings and reflections of undertaking the Health Policy MSc at @imperialcollege šš» Heading into the final two weeks š¬ Thanks @Imperial_IGHI for inviting me to contribute to the blog! @PulseInSync #Postgrad #Masters
My experience, learnings and reflections of undertaking the Health Policy MSc at @imperialcollege šš» Heading into the final two weeks š¬ 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/2024/07/2ā¦ #HealthPolicy #MScChat #Masters @imperialcollege
Mild hemophilia truly does matter and weāre with Shellye Horowitz, formally with HFA, to hear about HFAās Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and Iām Fine with Luke Pembroke. Listen & Subscribe š bit.ly/bloodstream_poā¦
Take part in a new survey for UK-based rare disease patient groups on gene therapy decision aids! š Accounting for socioeconomic position in patient decision aids for gene therapy Find out more and get involved: š ow.ly/QOAT50RnXYm @PulseInSync @imperialcollege
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
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
Today is #WorldHemophiliaDay! š©ø 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
It's finally arrived: April 17th! Today marks #WorldHemophiliaDayāa day dedicated to celebrating our global community. From all of us at the WFH, we wish you a joyous #WHD2024! š
The UK #raredisease community was out in force yesterday for @RareBeaconās #RareShowcase23 š¦ Superb talks involving system-wide stakeholders. Group šø w/ Lorna Allen (@cftrust) & Nick Meade (@GeneticAll_UK), co-members of @CGTCatapultās ATMP Engage initiative. @PulseInSync
šø at @camrarediseaseās #RAREsummit23 today with co-chairs of āATMP Engageā, Finn Willingham (@CGTCatapult) & Nick Meade (@GeneticAll_UK). Webinar on 8th Nov about PPIE in the delivery of ATMPs in the NHS. Register here šš» event.on24.com/wcc/r/4374097/ā¦ @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 š onthepulseconsultancy.com/publication-coā¦ #hemophilia
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 perspectiveā¦ until now šš»
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 perspectiveā¦ until now šš»
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/1ho005TuFxF4ā¦
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/1ho005TuFxF4ā¦ https://t.co/YVrMGsAhDd
Celebrated soft launch of @weareMSUKās āThoughts into Actionā Report in Parliament today. Highlights perceived QoL & intersectional experiences of those living with inherited metabolic disorders and disabilities. šø with Kirsty Hoyle, CEO of MS UK & @davidrose88 #raredisease
Brian O Mahony @Brianhemophilia
3K Followers 513 Following CEO of Irish Haemophilia Society,former President of WFH and EHC. Supporter of Kerry GAA. Interested in politics,history,advocacy, books. All opinions personal.
Dr Kate Khair PhD @katekhair
1K Followers 866 Following Nurse, researcher, Director of Research @haemnet. Passionate about bleeding disorder care for people globally ....... and šššš
Cathy Harrison š @CathyAH1980
1K Followers 1K Following Haemophilia ANP. WFH nurses committee Chair. Wife & mum, artist, forever learning. Winner of Nursing Times Nurse of the Year Award 2024. Opinions are mine.
WFH @wfhemophilia
8K Followers 169 Following The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
EHC_Haemophilia @EHC_Haemophilia
3K Followers 409 Following The European Haemophilia Consortium aims to improve the quality of life of people with haemophilia and other rare bleeding disorders throughout Europe.
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Haemophilia Journal @haemophilia_jnl
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Michael Makris @ProfMakris
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Brian O Mahony @Brianhemophilia
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Dr Kate Khair PhD @katekhair
1K Followers 866 Following Nurse, researcher, Director of Research @haemnet. Passionate about bleeding disorder care for people globally ....... and šššš
Cathy Harrison š @CathyAH1980
1K Followers 1K Following Haemophilia ANP. WFH nurses committee Chair. Wife & mum, artist, forever learning. Winner of Nursing Times Nurse of the Year Award 2024. Opinions are mine.
WFH @wfhemophilia
8K Followers 169 Following The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
EHC_Haemophilia @EHC_Haemophilia
3K Followers 409 Following The European Haemophilia Consortium aims to improve the quality of life of people with haemophilia and other rare bleeding disorders throughout Europe.
EAHAD @EAHADnews
3K Followers 470 Following EAHAD seeks to improve care for people with haemophilia and other bleeding disorders through research, education and multidisciplinary collaboration.
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2K Followers 1K Following President of The Haemophilia Society, World Federation of Hemophilia Youth Chair, Criminal Barrister & Lecturer
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IrishHaemophiliaSoc @HaemophiliaIRL
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