Rare Disease Research Partners (RDRP) has produced a useful leaflet which sets out the importance of participating in research when you or your family are living with a rare condition.
We know that you may have been asked many times to take part in research activities such as surveys, interviews and focus groups. These can feel time-consuming, confusing or repetitive. You may even ask yourself: Is this really making a difference? The answer is, YES!
One of the main barriers in rare condition research is understanding how the condition progresses over time and its impact on the daily life of the person with the condition and their families. This gap in understanding makes it more difficult to prove the benefits of treatments, affecting their chance of being approved for use and made available on the NHS.
By taking part in research and sharing your experience, even for just a few minutes in a short survey, you are helping build the knowledge which is essential for:
Faster diagnosis – by telling us about early symptoms and patterns
Improved symptom management – by sharing what matters most in the patient’s everyday life
Developing better treatments – by highlighting unmet needs
Support for families and caregivers – by helping us understand what caregiving involves
It can be especially hard to find participants for these types of research in ultra-rare conditions.
If you are interested in taking part in research and are happy to be contacted by Rare Disease Research Partners with opportunities to do so, please sign up here.
