Transforming the lives of those living with rare disease
Posted on March 23rd, 2016 by Ali Whittaker
This week’s guest blog comes from Raremark, whose mission is to transform the lives of those living with rare disease by connecting people and knowledge.
As doctors, you know the best places to get current and reliable scientific information. Maybe you have patients that look up medical information online from trustworthy sources, and come to you with research, but most probably don’t feel the need to. For someone with a rare disease, this is not the case.
Imagine you have been diagnosed with a rare disease. Your doctor is doing their best to support you, but they are one of many specialists and healthcare professionals that you see, and they’ve never seen anyone like you before. It’s taken you years to get a diagnosis, and you’re tired from having to explain your condition to family and friends. You’re confused about what this diagnosis really means and what research is out there in terms of managing day-to-day, and current and new treatments. You want to try and find out more, so you think about going online. But where do you go first?
At Raremark, we are trying to make important and relevant scientific research accessible to people affected by a rare disease. Our website contains summaries of scientific articles written in plain English, so that anyone can be informed and understand the research. Our aim is to promote understanding; not to leave our users feeling overwhelmed. To ensure we are only providing the most relevant research, we only display articles from the last 10 years, we focus on MEDLINE-indexed journals on PubMed, excluding articles on animal models.
We encourage our users to summarise these articles clearly and in plain English so that the people reading them can understand. It’s not about giving medical advice, but helping to keep patients informed. This allows patients to be part of the discussion and actively engage with their condition, particularly around topics they feel strongly about. One example of this is cystic fibrosis (one of our first conditions to be archived) and exercise.
Exercise is a huge topic currently in the cystic fibrosis community, as many people include exercise in their treatment regime. Social media is buzzing with patients and patient groups describing their experiences and encouraging others. On Twitter, cf/Aware said, “When it comes to exercise, cystic fibrosis is not an EXCUSE, it’s a REASON! Get active.”
To support this movement, Raremark interviewed a doctor living with CF, who had exercised his way off the transplant list. We also shared our list of articles relating to exercise in response to a conversation happening on Twitter. Both the interview and the summary started an online conversation on how physiotherapy can support a CF treatment regime.
If you have a specialist interest in rare disease, particularly cystic fibrosis or myasthenia gravis, want to know more or just to tell us what you think, let us know at email@example.com.