Did you know that rare conditions affect more than 3.5 million people across the UK? Or that two-thirds of rare conditions can cause chronic disability? What about the fact that most rare conditions do not yet have a treatment?
We’re working to change that and improve the lives of people with rare conditions, of all ages.
To make this change a reality, we need to work in partnership with people who have personal experience of a rare condition – whether they have a rare condition themselves or a carer or family member. Their unique insights and perspectives will help us to ensure the work that we do is relevant, acceptable and meets the needs of people with rare conditions.
Join the ‘We R Rare – Rare Conditions Network’ today!
Do you have personal experience of a rare condition? Whether you have a rare condition yourself or are bringing the perspective of a family member with a rare condition, your insights will help shape rare condition research and help develop clinical services that meets patient needs now and in the future.
In collaboration with Vocal, we’ve set up the ‘We R Rare – Rare Condition Network’. By joining the network you’ll find out about different opportunities to get involved across a variety of projects. Some may be one-off opportunities and others will be looking for longer-term involvement. It’s completely up to you how much you’d like to get involved.
If you have any questions or would like further information about getting involved, please get in touch with Sinduja (sinduja.manohar@mft.nhs.uk) and she’d be happy to help!
Established Lived Experience Patient Involvement Groups across Manchester
Across Manchester, there are a number of bespoke groups and panels made up of people who are using their unique insights and personal experiences of a rare condition to shape research. Some will focus on specific research projects and others take on a more strategic role and support a number of programmes focused on rare conditions. Together they ensure the patient voice leads the way.