Ending the Isolation of Living with a Rare Disease

rare disease article (2)Being diagnosed with a serious disease like breast cancer or rheumatoid arthritis can be devastating.  Faced with this situation, many people seek out others living with the same disease and find support and advice in a community of people facing similar struggles. But what’s it like to be diagnosed with something you’ve never even heard of and from which only a tiny minority of patients suffer each year?

Living with a rare disease – one which affects fewer than five people per 10,000 – can be isolating. While well-known diseases are written about in newspapers and championed through major awareness days and fundraisers, rare diseases are often known only to those whose lives are touched by them. Big name charities push tirelessly for more research to improve treatment and find cures for diseases like breast cancer but research to benefit the lives of people with rare diseases may struggle to attract either support or media attention.

While many pharma companies are active in rare diseases, the isolated nature of patients has traditionally made it difficult for them to engage with or support people living with the diseases within the regulatory framework in which the industry operates. But social media and the work of a few pioneering pharma companies and patient groups are starting to change this. Well-planned digital and social media activities can enable pharma companies to support patients and communities in an appropriate way.

The question facing pharma companies now is how to use social media, as opposed to if they should, which shows a massive institutional shift within the industry. By combining the existing online communities held by patient groups around the world with the resources and skills of pharma companies a truly patient centric approach can now connect those that were once isolated and living alone with a rare disease.