As technology connects patients across the globe, it is becoming more and more clear that rare diseases aren’t as uncommon as many would assume. There are over 7,000 identified rare diseases, meaning as much as 1 in 17 people are living with some form of rare health condition. But did you know there is no cure for at least 90% of these diseases?

The main challenge that stops pharmaceutical companies from innovating in the therapy area of Rare Diseases is the lack of available data. Since the number of patients with each rare disease is relatively small, there are logistical difficulties at every step of the drug lifecycle – from designing clinical trials and finding participants, to employing effective marketing strategies.

There is, however, a simple solution to overcoming these challenges: Harnessing insights from social listening.

Online Forums – a treasure trove of rare disease insights

When confronted with unknown symptoms, or when receiving a devastating diagnosis, the first thing many patients and their caregivers do is go online to learn more. Consequently, patients who are geographically dispersed across the globe tend to cluster together online, mostly in social media platforms dedicated to specific rare diseases. These social platforms provide patients and caregivers with the opportunity to support each other, sharing thoughts and feelings that might not come up during interactions with healthcare providers and practitioners (HCPs).

Increasingly, HCPs are also taking to social media to discuss unusual cases with their colleagues, obtain informal second opinions, and even share details of unique cases they have encountered. The internet – and social networking platforms in particular – are harbouring a treasure trove of rare disease insights.

Overcoming logistical barriers with social insights

Tapping into this rich source of real-world data requires social listening – monitoring and collecting social conversations to determine the ‘themes’ from which insights can be drawn. Social data collected from patients and caregivers across time can help chart a patient’s physical and emotional journey, from the time they first experience a symptom to the final treatment they receive, remission, and palliative care. The unmet needs identified throughout this journey represent opportunities for pharma to put their stake in the ground and make their mark within rare diseases and orphan drugs.

Examining social data gives pharma a 360-degree view of the rare disease experience, enabling them to incorporate patient-centricity into both drug development and customer engagement. Social listening can also be employed to understand stakeholder needs and deliver content based on preferred topics for engagement.

Convosphere's new whitepaper ‘The Critical Role of Social Insights for Rare Diseases’

Download a free copy of the whitepaper and contact us if you want to learn more about how Convosphere can help optimise your Rare Disease strategy. The whitepaper covers:

- Driving patient-centricity by mapping the rare disease journey

- Identifying unmet needs at each stage of the patient journey

- Identifying deficiencies and supplements to current treatment strategies

- Using social data insights to take care of the carers

- Guiding orphan drug development with social listening

- Using social data insights to inform HCPs

- Leveraging insights gleaned from social listening for better product positioning