On The Pulse Consultancy

Independent strategic consultancy by @TheWoollard partnering with industry and multi-agencies on patient advocacy and policy-related activities in rare disease

[ABPI @ABPI_UK]

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: https://t.co/LWQq9BGxcw

[On The Pulse Consultancy @PulseInSync]

@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: https://t.co/movAZRonXp

@NIHRresearch

[ISTH @isth]

🩸#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: https://t.co/fCCxOGMMC3

[On The Pulse Consultancy @PulseInSync]

🧬 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: https://t.co/GfrONTz0Ea

@TARareDisease

[Laurence Woollard @TheWoollard]

🚨 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.”

🔗 https://t.co/e5oJssMOFY

#hemophilia #raredisease @PulseInSync @BSMSMedSchool @TARareDisease

[Emma Lane @dyskochick]

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!

[Laurence Woollard @TheWoollard]

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

[Institute of Global Health Innovation @Imperial_IGHI]

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:
https://t.co/8jQBWllc1q

#HealthPolicy #MScChat #Masters @imperialcollege

[BloodStream Media @BloodStrmMedia]

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 👉 https://t.co/NfsgnaA6dB

[On The Pulse Consultancy @PulseInSync]

UPDATE: The survey has been extended by one week and will now close at 5pm on Friday 10th May 2024.

[On The Pulse Consultancy @PulseInSync]

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: https://t.co/alQAphmpMA

@Imperial_IGHI @imperialcollege @HaemoSocUK

[Beacon for Rare Diseases @RareBeacon]

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: 👇

https://t.co/dc6z4VSqMP

@PulseInSync @imperialcollege

[Dr Rich Gorman @SustainableRich]

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

[Cathy Harrison 💙 @CathyAH1980]

Great to see @TheWoollard @SustainableRich joining us virtually in a recorded video evaluating reclassifying haemophilia based on outcomes & phenotype #WFHCongress2024

[Therapeutic Advances in Rare Disease @TARareDisease]

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

https://t.co/sAngoJohQi

@TheWoollard @SustainableRich @DRosenfelt @SageClinMed

[WFH @wfhemophilia]

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! 🎉

[Laurence Woollard @TheWoollard]

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

[Laurence Woollard @TheWoollard]

📸 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 👉🏻 https://t.co/zaRcBsX04i

@PulseInSync #raredisease

[On The Pulse Consultancy @PulseInSync]

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 👉 https://t.co/I5vGj4OJa1

#hemophilia

[Laurence Woollard @TheWoollard]

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 👇🏻