Within our work, we are often asked if it is worth doing research in rare diseases areas when the anticipated volume of conversation and HCPs involved might be much lower. The answer is always a resounding yes, we might have to look deeper or wider but there are always insights to be gained from understanding what HCPs are (or even are not) talking about online and who is leading that conversation.
If we take Hemophilia(US)/Haemophilia(UK) as an example, let’s take a dive into what we see and what that might mean for the pharmaceutical companies working in this area. When talking about research, the Haemophilia Society in the UK says “Research by the global pharmaceutical industry has already revolutionised the lives of people in many parts of the world…”
Using CREATION Pinpoint® we analysed over 3,100 social media posts by around 1,300 verified HCPs globally between July 2024 and July 2025. Our analysis reveals not only what they are talking about, but also when, and who stands out in those conversations as trusted by their peers. In this article, we’ll explore those insights and look at how they can inform strategy for those pharmaceutical companies who continue to look for longer-term treatments and ultimately a ‘cure’ through emerging approaches like gene therapy.
Timing Is Everything: When are HCPs talking?
If we take a look at the overall volume of HCP posts from July 2024 to July 2025, we can see some key spikes in conversation in December 2024 and again in February, April and July 2025.
Looking into those conversations, we can see they centred around several key events:
- From July 2024, even before the major spike in conversation seen in December, HCPs were already actively discussing gene therapy advancements. This included a growing interest in novel clinical trials like Pfizer’s BASIS trials for Hympavzi (marstacimab) and Sanofi’s XTEND clinical trials for Altuviiio (US/Japan/Taiwan) / Altuvoct (Europe) (efanesoctocog alfa).
In 2025, there were some more key drivers of conversations:
- Feb 2025: The European Association for Haemophilia and Allied Disorders (EAHAD) annual meeting also generated a lot of discussions, with Professor Michael Makris, a prominent HCP, celebrating the meeting and saying it has grown from a regional meeting to an international scientific conference.
I was so pleased to see clinicians and scientists from over 70 countries attend the #EAHAD2025 meeting in Milan last week. What started as a regional #hemophilia meeting is now an international scientific conference.
— Michael Makris (@ProfMakris) February 9, 2025
- Apr 2025 was World Hemophilia Day and we saw conversations centre around access to care, awareness, and gene therapy promise with examples including a US-based Pediatric Hematologist using the event as a good time to share a publication.
Happy to mark World #Hemophilia Day with this publication showing long-term benefits after gene therapy.
With @LindseyAGeorge
Children's Hospital of Philadelphia Researchers Find Gene Therapy Shows Long-Term Benefits for Hemophilia B Patients https://t.co/32y7eopZLi
— Ben Samelson-Jones, MD, PhD (@DrSamelsonJones) April 17, 2025
- On June 30th, 2025, HCPs turned to social media to discuss the Argentine government’s decision to cut funding for the Hemophilia Foundation, a move that sparked intense backlash. Many HCPs amplified patients’ concerns. For instance, a patient’s post, which highlighted the decision as a threat to over 4,800 patients who rely on the foundation for specialized care, was shared by 6 HCPs. HCPs raised concerns about the dismantling of public health services, with HCP Nicolás Kreplak calling the action “cruel”.
Strategic takeaway: These spikes in conversation are not random. They signal key moments of influence. By understanding the different drivers for HCPs’ social media conversations, pharmaceutical companies can look for ways to join the conversation in a timely and meaningful way – online, or offline.
HCPs Are Global and Multilingual
Posts from HCPs come from all around the world, with the top 6 countries where HCPs talked about hemophilia being the 🇺🇸United States, 🇬🇧 United Kingdom, 🇪🇸 Spain, 🇮🇳 India, 🇫🇷 France and 🇲🇽 Mexico.
The majority of these posts were in English language (73%), where gene therapy was a major topic of discussion. There was debate around its potential impact, particularly in relation to its high cost, with some seeing promising benefits.
Spanish-language posts (19%) largely focused on patient advocacy, access to treatment, and raising disease awareness, often using infographics to communicate key messages.
Informe de la Cuenta de Alto Costo @CuentaAltoCosto sobre Hemofilia año 2024. Las flechas señalan dos indicadores que se han deteriorado entre 2023 y 2024: Aumento de sangrado articular y perdida en el seguimiento en la atención médica. Esto también es un reflejo del desmonte… pic.twitter.com/aVGvwv3KOy
— Luis Jorge Hernández F. (@ljhernandezf) February 10, 2025
Meanwhile, a smaller portion of posts in French language (0.3%) took a more scientific tone, with HCPs sharing clinical trial results, journal articles, and updates from medical congresses.
Une excellente présentation du Prof Antoine Rauch à la première session plénière de #CFH2024 @cfh_2024 sur la thérapie génique #genetherapy en #hemophilie. La synthèse la plus complète que j’ai pu écouter récemment sur l’environnement, le context, les données historiques et… pic.twitter.com/XpLuGOvLq5
— Daily Dose (@Karen_Pinachyan) September 11, 2024
Strategic takeaway: Tailored content in Spanish and English could be the key to unlocking wider HCP engagement, especially if you consider the nuances of the different topics discussed in the different languages.
Company Mentions:
If we look at the HCP mentions of pharmaceutical companies, we can see these make up a very small proportion of the conversation, with only 113 posts in total.
Even in these smaller numbers, it’s important to dig into the conversations. A good proportion of the Pfizer mentions relate to their withdrawal of Beqvez and the ending of their partnership with Sangamo Therapeutics around gene therapy for Hemophilia. Whereas for Novo Nordisk the mentions center around FDA approval and praise for the innovation, such as a German HCP who posted about game-changing preclinical data.
🚀 Revolutionary megaTAL Technology. Jacob Lund and Novo Nordisk just dropped game-changing preclinical data at ISTH 2025! Their megaTAL nuclease platform precisely inserts FVIII genes into liver cells. Genomic insertion and FVIII expression were proportional to nuclease activity… pic.twitter.com/GIdgE2DmB0
— Wolfgang Miesbach (@miesbach) June 24, 2025
Brand Mentions
Looking at what HCPs talk about when it comes to hemophilia brands, here we see Pfizer’s Hympavzi being the most mentioned, followed by Sanofi’s Qfitlia and Altuviio and Novo Nordisk’s Alhemo.
Strategic takeaway: Whilst we typically don’t see many online HCP mentions of the pharmaceutical companies, there is more discussion about products.
Digital Opinion Leaders
Within the HCP conversation, we can see @ProfMakris is a key voice that posts a lot about Hemophilia and is trusted by his HCP peers in the online conversation. As an accomplished academic leader in haemophilia, and a highly visible voice in the online conversation, he might stand out as an obvious Digital Opinion Leader already recognised by pharmaceutical companies in this space.
However, perhaps Dr William McKeown, who is not only an HCP but also a patient with Haemophilia might be better aligned for some.
Ultimately, it depends: we tracked over 1,300 HCPs talking online about hemophilia, and the right DOL for you could be one of the newer emerging voices within that number. You might want to check out ‘Your Go to guide for understanding and engaging with digital opinion leaders’ and DOLs are not your paid media channel as good places to start understanding how to engage with HCPs who might just be the right DOL for you.
Conclusion
The HCP conversation in haemophilia does not just happen at congresses; it’s happening daily, globally, and in public. The companies that act thoughtfully, and respond to what HCPs are talking about in their unprompted online conversations with each other will not only stay relevant but have the opportunity to help shape the dialogue and achieve great outcomes for HCPs and patient care in rare diseases.
