On The Pulse Consultancy (@pulseinsync) 's Twitter Profile
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

linkhttps://onthepulseconsultancy.com/ calendar_today26-08-2017 15:26:44

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Laurence Woollard (@thewoollard) 's Twitter Profile Photo

Celebrated soft launch of Metabolic Support UKโ€™s โ€˜Thoughts into Actionโ€™ Report in Parliament today. Highlights perceived QoL & intersectional experiences of those living with inherited metabolic disorders and disabilities. ๐Ÿ“ธ with Kirsty Hoyle, CEO of MS UK & David Rose #raredisease

Celebrated soft launch of <a href="/weareMSUK/">Metabolic Support UK</a>โ€™s โ€˜Thoughts into Actionโ€™ Report in Parliament today. Highlights perceived QoL &amp; intersectional experiences of those living with inherited metabolic disorders and disabilities. 

๐Ÿ“ธ with Kirsty Hoyle, CEO of MS UK &amp; <a href="/davidrose88/">David Rose</a>

#raredisease
Dr Rich Gorman (@sustainablerich) 's Twitter Profile Photo

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/1ho005TuFxF4โ€ฆ

Recently, Thachil &amp; colleagues published in <a href="/JTHjournal/">JTH</a> arguing for a reclassification of #hemophilia. <a href="/ProfMakris/">Michael Makris</a> &amp; <a href="/GuyYoungMD/">Guy Young</a> responded. And now so have <a href="/TheWoollard/">Laurence Woollard</a> and I. We believe it's vital such discussions involve people living with #haemophilia: authors.elsevier.com/a/1ho005TuFxF4โ€ฆ
Laurence Woollard (@thewoollard) 's Twitter Profile Photo

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 perspectiveโ€ฆ until now ๐Ÿ‘‡๐Ÿป

On The Pulse Consultancy (@pulseinsync) 's Twitter Profile Photo

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 ๐Ÿ‘‰ onthepulseconsultancy.com/publication-coโ€ฆ #hemophilia

Laurence Woollard (@thewoollard) 's Twitter Profile Photo

๐Ÿ“ธ at Cambridge Rare Disease Network (CamRARE)โ€™s #RAREsummit23 today with co-chairs of โ€˜ATMP 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 ๐Ÿ‘‰๐Ÿป event.on24.com/wcc/r/4374097/โ€ฆ On The Pulse Consultancy #raredisease

๐Ÿ“ธ at <a href="/camraredisease/">Cambridge Rare Disease Network (CamRARE)</a>โ€™s #RAREsummit23 today with co-chairs of โ€˜ATMP Engageโ€™, Finn Willingham (<a href="/CGTCatapult/">Cell and Gene Therapy Catapult</a>) &amp; Nick Meade (<a href="/GeneticAll_UK/">Genetic Alliance UK</a>). 

Webinar on 8th Nov about PPIE in the delivery of ATMPs in the NHS. Register here ๐Ÿ‘‰๐Ÿป event.on24.com/wcc/r/4374097/โ€ฆ

<a href="/PulseInSync/">On The Pulse Consultancy</a> #raredisease
Laurence Woollard (@thewoollard) 's Twitter Profile Photo

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

The UK #raredisease community was out in force yesterday for <a href="/RareBeacon/">Beacon for Rare Diseases</a>โ€™s #RareShowcase23 ๐Ÿฆ“ Superb talks involving system-wide stakeholders.

Group ๐Ÿ“ธ w/ Lorna Allen (<a href="/cftrust/">Cystic Fibrosis Trust</a>) &amp; Nick Meade (<a href="/GeneticAll_UK/">Genetic Alliance UK</a>), co-members of <a href="/CGTCatapult/">Cell and Gene Therapy Catapult</a>โ€™s ATMP Engage initiative.

<a href="/PulseInSync/">On The Pulse Consultancy</a>
WFH (@wfhemophilia) 's Twitter Profile Photo

It's finally arrived: April 17th! Today marks #WorldHemophiliaDayโ€”a day dedicated to celebrating our global community. From all of us at the WFH, we wish you a joyous #WHD2024! ๐ŸŽ‰

Therapeutic Advances in Rare Disease (@tararedisease) 's Twitter Profile Photo

Today is #WorldHemophiliaDay! ๐Ÿฉธ 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

Dr Rich Gorman (@sustainablerich) 's Twitter Profile Photo

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

Beacon for Rare Diseases (@rarebeacon) 's Twitter Profile Photo

Take part in a new survey for UK-based rare disease patient groups on gene therapy decision aids! ๐Ÿ“ Accounting for socioeconomic position in patient decision aids for gene therapy Find out more and get involved: ๐Ÿ‘‡ ow.ly/QOAT50RnXYm On The Pulse Consultancy Imperial College London

BloodStream Media (@bloodstrmmedia) 's Twitter Profile Photo

Mild hemophilia truly does matter and weโ€™re with Shellye Horowitz, formally with HFA, to hear about HFAโ€™s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and Iโ€™m Fine with Luke Pembroke. Listen & Subscribe ๐Ÿ‘‰ bit.ly/bloodstream_poโ€ฆ

Mild hemophilia truly does matter and weโ€™re with Shellye Horowitz, formally with HFA, to hear about HFAโ€™s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and Iโ€™m Fine with Luke Pembroke.

Listen &amp; Subscribe ๐Ÿ‘‰ bit.ly/bloodstream_poโ€ฆ
Institute of Global Health Innovation (@imperial_ighi) 's Twitter Profile Photo

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/2024/07/2โ€ฆ #HealthPolicy #MScChat #Masters 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&amp;A with Laurence:
blogs.imperial.ac.uk/ighi/2024/07/2โ€ฆ 

#HealthPolicy #MScChat #Masters <a href="/imperialcollege/">Imperial College London</a>
Laurence Woollard (@thewoollard) 's Twitter Profile Photo

My experience, learnings and reflections of undertaking the Health Policy MSc at Imperial College London ๐Ÿ‘‡๐Ÿป Heading into the final two weeks ๐Ÿ˜ฌ Thanks Institute of Global Health Innovation for inviting me to contribute to the blog! On The Pulse Consultancy #Postgrad #Masters

Emma Lane (@dyskochick) 's Twitter Profile Photo

It was definitely epic, I avoided the Hangry thanks to the sweet station and had recorded a fabulous podcast with Laurence Woollard and Nicola Hill๐Ÿ’™, topic to be revealed soon!

It was definitely epic, I avoided the Hangry thanks to the sweet station and had recorded a fabulous podcast with <a href="/TheWoollard/">Laurence Woollard</a> and <a href="/ncmediatv/">Nicola Hill๐Ÿ’™</a>, topic to be revealed soon!
Laurence Woollard (@thewoollard) 's Twitter Profile Photo

๐Ÿšจ 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 โ€œcure.โ€ ๐Ÿ”— journals.sagepub.com/doi/10.1177/26โ€ฆ #hemophilia #raredisease On The Pulse Consultancy BSMS Therapeutic Advances in Rare Disease

On The Pulse Consultancy (@pulseinsync) 's Twitter Profile Photo

๐Ÿงฌ ๐๐จ๐ฐ ๐ฅ๐ข๐ฏ๐ž: ๐๐ฅ๐จ๐  ๐จ๐ง ๐š ๐ง๐ž๐ฐ ๐ž๐๐ข๐ญ๐จ๐ซ๐ข๐š๐ฅ ๐จ๐ง ๐ง๐ž๐ฐ๐ฌ ๐ฆ๐ž๐๐ข๐š & ๐ ๐ž๐ง๐ž ๐ญ๐ก๐ž๐ซ๐š๐ฉ๐ฒ. Laurence Woollard & Dr Rich Gorman explore how news media hype may shape perceptions of gene therapy in haemophilia. ๐Ÿ‘‰ Read: onthepulseconsultancy.com/new-publicatioโ€ฆ Therapeutic Advances in Rare Disease

ISTH (@isth) 's Twitter Profile Photo

๐Ÿฉธ#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:

๐Ÿฉธ#WorldHemophiliaDay patient spotlight: <a href="/TheWoollard/">Laurence Woollard</a> 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: