Patient, carer and public involvement

The involvement of patients, their carers and the public (PPI) is central to everything we do. Our work focuses on communicating effectively and helpfully with these key stakeholders.

Your vital role in rare disease research

Of course the role of people diagnosed with a rare disease is vital to our research projects. But did you know that’s not the only way that patients and their carers alike can help? The ‘TRC’ stands for Translational Research Collaboration – in other words, it’s all about taking the outcomes of clinical research and working with patients, carers, industry and other research bodies to translate them into new treatments that genuinely make life better for patients. And that’s where you come in.

Whether you’re a patient or a carer, we need your views, experiences and insights to help us ensure our research meets the needs of the people who matter most: you! The role of patients and the public in general is now considered essential to healthcare research – and these days the funding organisations expect to see some element of patient and public involvement (PPI for short) before releasing funds.

So why not get involved? Our team would love to hear from you – just contact us via the contact form here to find out what opportunities are available.

Rare Disease Day

Here’s another great way to find out more about getting involved without any obligation.

First held in 2008, Rare Disease Day is recognised around the world and receives input from patient organisations in more than 40 countries – so it is already making a big difference in its mission to increase awareness of rare diseases in general and to highlight rare diseases as a public health priority for governments and their health departments.

Indeed Rare Disease UK has made great progress since its inception in 2009 by coordinating awareness-raising parliamentary events throughout the UK. The day is coordinated by Eurordis at an international level and by national alliances for rare diseases in individual countries and, appropriately, it is held on that rarest of days, 29 February in a leap year, and of course on the 28th in other years.

Because public involvement is so important in rare diseases research, the activities and events with which is it celebrated are enjoyable as well as educational, including coffee morning and sponsored walks alongside large scale meetings between those involved in the field of rare diseases and talks to further educate the public and professionals.

See how we celebrated Rare Disease Day 2016